Tuesday, 26 February 2008

Parents with Aspergers


Back in December 2005, as a result of some astute friends (Cheryl - you are one of them), I was looking into the possibility my mother was an adult with Aspergers. It would explain a lot of her bizarre behaviour, but at the time I couldn't get to grips with it and then life took over and within a matter of weeks I was in contact with long-lost cousins. One of whom is so special to me and then ended up validating stuff that she saw in my childhood so I knew I wasn't making it up. With all that going on the Aspergers thoughts were sidelined.

Until late Sunday afternoon when my sister stuffed a Times newspaper article under my nose. Does your partner have Asperger's? might be about partners but ends with a checklist. On all eight points we can unreservedly tick for our mother:

The Asperger’s profile

Your partner may have Asperger’s syndrome if he (or she) has most or all of the following traits. Does he . . .
  1. Have difficulty interpreting body language and facial expressions?

  2. Have difficulty understanding jokes, metaphor and sarcasm because he takes everything in a very literal way?

  3. Struggle to maintain friendships?

  4. Become withdrawn and seem to be uninterested in others, appearing aloof?

  5. Have poor social awareness and find it hard to imagine how his behaviour impacts on other people?

  6. Love routines and get very upset if these are broken?

  7. Have an intense and all-consuming special interest or hobby?

  8. Have sensory difficulties? Is he oversensitive to touch or smell or noise or to a particular taste (people with Asperger’s have a very limited diet). In some cases, there can be an undeveloped sense.

Adapted from the National Autistic Society website: www.nas.org.uk


So now I am digesting. And researching, again, and came across this list from a Conference in 2005 given by Dr Tony Attwood (originally found on faaas.org):

The Parent with Asperger’s Syndrome

Characteristics
• Knowledge of normal childhood abilities and the parental role.
• Perfectionism.
• Regimentation.
• Anger.
• Abuse.

Child’s Perception
• Lack of affection, understanding and support. (Aloof).
• Criticism not compliments.
• Embarrassment in public.
• Fear of the parent’s mood and not to antagonize.
• Fear of the ‘cold’ touch of affection.
• Disagreements between parents.
• Parent has a monologue on their own problems.
• Intolerance of noise and friendships.
• Egocentric priorities.
• Favoritism.
• Feeling a nuisance.
• Desire to leave home or move inter-state or abroad.

Child’s Reaction
• Seeking affection and approval.
• Hatred.
• Escape using imagination, solitude, alternative family.
• Choice of partner.

Issues
• Recognizing the disorder in a parent.
• Resolving past issues.
• Explaining the person to other family members.


I am still working out my position but it seems clear that my mother has undiagnosed Aspergers. But also thrown into her mix is a whole bundle of stuff that created a hellish childhood for me. Any thoughts of mine to seek acknowledgement or even an apology are shot through but that's sort of OK. This might just help me to finally let go.

PS. I love this article I have just read:
Alien Parenting - A mother with Asperger's Syndrome (Link removed as no longer working - 12/2012)

PPS. A post I wrote since writing this, telling a bit about how life was for me Spring Cleaning of the Mind



PPPS. In early May 2011 my mother died very painfully and I was there for her doing what I could in those last days. I would not wish that level of pain on any living creature. Still, the past happened but I feel like I am supposed to whitewash and forget it. I am still processing and will likely continue for some time to come. I am up and down not sure what or why. Your comments here are still relevant and very much appreciated - thank you. 14 June 2011


PPPPS. December 2012: I am starting to add labels to my posts so that other relevant posts of mine might be more accessible, if wanted. I have also added back some of the more upsetting posts (Jan 2006) as they may serve a purpose for others who feel they are alone. Labels include aspergers   childhood or see the label cloud to the left. I read all the comments posted and welcome them.



81 comments:

Cheryl said...

Acknowledgement is actually now more likely - provided mum accepts a diagnosis in order to begin the rather fascinating study of 'how the typicals think' - neuro-typicals (average people) are usually a source of confusion and frustration for an Aspie.
Understanding the clash of expectation even from an academic and logical point of view may yet lead to a genuine apology, of sorts.

After all that ((((HUGE HUGS!)))))

I went to wrongplanet.net to see if it was worth recommending to you, and found something on Genevieve Edmonds who wrote social survival guides for Aspergers adults. I'd never heard of her before, and that's possibly just doubled my Amazon book wish-list.

More hugs, Ok?

xxxx

Josephine said...

I recognise a great deal of this from my own mother's behaviour too...

(Cheryl...how the devil do I get in touch with you now?! You know you still have access to my blog! I think. Doris has my email, in case you've lost it ;-) [Sorry Doris, don't mean to hijack!])

Doris said...

Cheryl
I have read a lot now that also suggests that sort of processing by the AS person ought to be possible. However, I think there is other stuff in my mother's psyche and much that could not accept such a perceived attack upon her. Decades ago now, she was once questioned on her modus operandi by her first daughter (my half-sister) and has never forgiven her and they both choose not to have contact with each other to this day. If that was to be the outcome for me I don't much mind that now, however I think the impact on the rest of the family will be just too difficult. I will keep a bit of an open mind on that one but caution is still with me. And also for the purposes of processing my stuff it might not now be important for her to acknowledge.

I looked up Genevieve Edmonds on wrongplanet, since you mentioned her and was most saddened that as a young adult with AS she has just recently taken her own life.

Jo
Indeed with regard to your mother. Funny that I had asked you about it a few months ago but didn't think again in relation to my own mother.

And Jo - have you tried clicking onto Cheryl's blog? You might be in for a nice surprise to see it there :-)

cheryl said...

Jo -
You're still on my contact list on Facebook. My blog is very sporadic; no promises there.

Doris - I'm a brunette, but that doesn't make me Hitler any more than it makes me Cher. You are right that having Aspergers takes no more individuality from you than, say, being dyslexic. It reduces some capacities and enhances others and is definitely part of the puzzle, but doesn't begin to touch free will.

More hugs.

Jen P said...

I'm quoting your post...thanks for this.

cweibel said...

The first time I read about Asperger's Syndrome a light went off in my head. My mother and certain other members of my family display Asperger tendencies. When broaching the subject with one of my sisters she responded with hostility--she gave up the most just to get what little love she could from my mother and is in no shape to face reality. I didn't probe it further but I didn't forget it either. After that I became convinced my Mother was a Narcissistic Character (a psychological disorder marked by self absorbtion). But recently I've discovered a genetic predisposition to Aspergers on my Mother's side of the family and I'm 99% convinced that that's what it is. My parents are now in their 90s and there is no benefit to be had by confronting them with this. I'm still angry but I find peace in the knowledge that she couldn't help it it. She once said her Aunts, who partly rasied her, told her it would be alright if she didn't get married and have children. She got married and had six children and I couldn't tell you that any of them are truly happy. There were fights all along the way and I suppose my Father suffered most. It isn't time yet but someday I'll get together with my siblings with as much information about Aspergers I can absorb and discuss it. Maybe it will help them to know she was suffering too and that she wasn't stupid after all. The one thing that helped me was a very long separation from my WHOLE family, but I miss them.

Good Luck,
Carolan

Anonymous said...

While I have found some members of my family welcomed the chance to talk about our Aspies, others were downright angered by the suggestion. Proceed with caution, this is genetic and you will likely discover other relatives have AS too. Further discussions with the angry ones led me to pull back as it became clear they shared the traits in my mom and my sister that we all know too well.

Aspie reactions to being confronted as having AS vary. My sister, perhaps at the extreme end of the spectrum, was absolutely indifferent and wanted to talk more about her favorite TV show. My mother, on the other hand, was quite angry-- she believes she actively practices empathy (but she always gets it wrong, empathy just happens ma!) and was enraged by the suggestion she is not empathetic. And she believes everything she did was for my benefit and I should be thankful.

As a son and sibling it is a real bind because the relationships with my mom and sister are real one way streets no matter how I try to keep limits on things. I have frequently considered a permanent break. The years I have avoided contact with them have been happier and healthier. They are exhausting.

Diana said...

I don't know if you will ever get this comment, but thank you for posting this. I'm going through a similar situation trying to figure out if my mother might have undiagnosed Asperger's and this blog helps so much. I'm starting to tear up at finding a possible answer. The descriptions here describe my mom and my relationship with her perfectly. Thank you!

Doris said...

Thank you to Cweibel, Anon and Diana. I have read your comments with interest and appreciated hearing I am not alone. Though it is sad there are others out there living through this madness.

As a result of your comment Diana I have re-read a few of my posts that are linked to this one and well... it is "good" to look back on it and remind myself how far I have come instead of continually turning in on myself with self-destructing thoughts. I've been living through my madness and despite me stating a few times I am over my childhood I clearly am not! However, a lot has shifted in recent months and I may post an update.

Kindest thoughts.

Jen said...

Thanks so much for posting this. I think myself, my husband, and my daughter all have Asperger's! Holy cow, how does anyone handle that?

I am having trouble with my husband's mood swings and the way he seems to dramatically alter his recollection of different events based on what kind of mood he is in currently. If he is a good mood, he will recollect with compassion and more accuracy. If he is in a stressed/bad mood, he will recollect in the most negative light, often inaccurately negatively steriotyping, with denial of any extenuating circumstances that were part of the context of the event. Is this Asperger's or something else?

Anonymous said...

I am a parent with Aspergers syndrome. I realized that my daughter was emotionally distressed and did not understand why. I became concerned about her well being and went to a family therapist who disgnosed me with the disorder. I was highly disturbed by the fact that my behavior was ruining my daughter's childhood and immediately read everything that I could about NT thinking in order to adjust my behavior. This is a problem that has existed for me since childhood and has caused a great deal of depression and sadness. People with aspergers don't want to be socially outcast or abusive, they just don't quite fit in. Remember that aspergers parents are people who are probably dealing with their own sadness, some part of which may be guilt (at least in my case) over the fact that they do not "fit in" enough to give their babies a normal childhood. As soon as I discovered that my strangeness had a diagnosis and a physical explaination, I felt a certain sense of relief. (Yes, I knew that I was different and it caused lifelong depression). My children now participate in more social activities outside the home and we have joined a parent participation playgroup. I am also attending a support group for Aspies and taking anti-depressant medication. Hopefully, my children were not permanently damaged by my disorder, but I cannot appollogize to them for my aspergers or for being who I am (especially since I am trying my best to correct the problem). I am not good at showing it, but I love my children deeply (as I am sure all of the parent's of the people on this site also love their children.

Anonymous said...

I read the above comment with delight to hear that it is possible to acknowledge that aspergers can cause distress and confusion in a child, and that the writer realised that something was wrong and did something about it. I then became quite angry when I read that she (I presume it is a lady) could not apologise for it and struggles to show love to her children?!

After a series of nervous breakdowns and 25 years of being in and out of the UK psychiatric service I was finally diagnosed as having elements of borderline personality disorder 2 years ago. Through research, self development and therapy I now believe my mother was a full blown Borderline and falls into the category that behaves like a narcissistic queen with elements of witch which is very very cruel.

What I could never understand is that my father never intervened or stopped her mentally abusing me for years. He has always denied that anything was mentally wrong with my mother (until I was diagnosed and had another breakdown two years ago when suddenly he threw it into my face and told me not to have children)

I have just begun research into aspergers (marriage between borderlines and aspergers seems to be fairly common?!) and have come to the conclusion that my father is probably an undiagnosed aspergie as he demonstrates a lot of the qualities. So I am presuming that he never intervened in my mothers abuse since he doesn't have a full spectrum of emotions or processes emotions differently. I must have been perceived as a distressed and difficult child that needed to be shut up because he couldn't cope with my emotions?

As someone whose life has been turned upside down by dysfunctional parenting I would absolutely love an acknowledgement and apology from my father. You may not be able to help your diagnosis but you can manage it's impact on others.

I am now expecting twins of my own and I am approaching raising them with trepidation.

I would be interested in what other people have to say on this subject.

Liz

megan said...

Reading this post and the comments has been a revelation. I am only now (at almost age 40) realizing that my entire family (mother/father/2 brothers) has Asperger's.

My parents were both kind of odd birds who married late (in what has always been portrayed as more of an act of desperation than a romantic event). Neither seemed particularly thrilled with parenting (when I was pregnant with my son my mom's comment was--"you know, being a parent isn't all it's cracked up to be").

I've had problems with them all over the years and have never been able to get close to them (I share many of their quirks, but I'm very emotional and empathetic--the complete opposite end of the spectrum). As a kid, I withdrew into my room or found hiding places outside and created imagined universes to cope. I fantasized about running away over and over. As soon as I got a taste of affection and love and deep conversation, I did just that. Ironically, the one thing that I have always wanted was a close family and I had to move thousands of miles away (to a country that is very family oriented) to try to make that happen or at least be close enough to others that a bit rubs off.

I loved reading about the mother who has Asperger's and figured it out and is trying to acknowledge it and adapt. If only my mother were capable of that! Because of the kind of expectations a daughter has of her mother, my biggest issues have always been with her (and her failure to protect me against the torment of my older brothers didn't help). I have always hated how detached everyone in my family is and how they all refuse to acknowledge that there are other ways of being. When it comes to me, she has always been so defensive and makes me feel like my feelings are inappropriate and desperate (lest you think I'm needy, she hasn't said she loves me in 25 years or so--and she's cool with that). She holds a grudge about the tiniest incidents from my youth, but can't acknowledge enormous inappropriate actions on her part. In fact, she's incapable of discussing anything in the past at all (even good stuff), expressing regret, acknowledging mistakes, etc. She did so many things right--all of the logistical parental stuff--I think she has always viewed my desire for a deeper relationship or to live in a reality-based world where things happen and are remembered as an unappreciative betrayal of her efforts and sacrifices. Really I have just wanted what everyone else seems to take for granted... expressed love, mutual interest, to be listened to, to be known...

Conversation with her is nearly impossible. She shows no interest in my life, directs any conversation right back to herself and things that have happened to her (no matter how tangential that might be to the topic at hand). I think that now--after I have pretty much given up on everything else--that's what really drives me crazy the most. Especially now that I see it hurting my son when they are together (only once a year, but even then she doesn't listen to him or try to really get to know him).

She's in her seventies and will never get a diagnosis (she doesn't believe in self-help, introspection or psychiatry, and thinks that everyone else has a problem, not her). My father recently died under pretty awful circumstances (long story), that just brought all of this latent stuff to a head. I'm almost as upset about how my family dealt with that situation, and really failed him when he needed us, as I am with his death itself.

Anyway, I'm just happy to know that I'm not the only one born into a family like this and I wish you all the best in making your way in the world. I wonder what people like us--the children of Asperger's parents have in common. As hard as it is for people with Asperger's to live amongst us as a minority, I think it could be worse for us to live in their world...

Doris said...

Hugs to all who arrive here, read and then share. It touches me to read of your experiences too and each time a new message comes through it makes me realise we are not alone and I feel one step closer to feeling that maybe there may be an answer. Something that I had not previously realised (though I can't think why) are those young people and children currently going through their hellish experiences. If I could hold a hand of love and hope I will.

Bernbeau said...

Thank you.......there is a God! Finally, I understand.....my family, my ex-wife!!!!! It all fits.....Asperger's!!!!!! Why did I marry an Aspie? That's all I knew....it was comfortable....but not right. I thank my father for his NT genes...being the only NT in my family!!! For decades, I have tried to unite the family.....reunions, meetings, outings....and it never worked! Squabbles, discord.....and isolation were the only outcomes!!!!!!!!
While understanding has helped, it has not taken the edge off of my life!!!! Hopefully, I'll be able to overcome this!
I have decided to avoid my siblings and mother....however, I miss them very much.....which is surprising given all the s&$t they gave me and continue to give me!
Once again, many thanks to all of you my brothers and sisters in arm!

Doris said...

Hi Bernbeau and thank you for commenting. It is curious how finding out about this condition can help so much. It doesn't stop the madness but certainly makes it somewhat less baffling and frightening.

Sonny said...

Hi everyone,

It is so great to hear from you all! I suspect that my father (in his 70s) has Aspergers. I am still suffering from growing up with him as a parent who neglected me emotionally, and continues to. He adamantly refuses to entertain the idea of joining us to see a family therapist, which my sibling and I have been trying to get our family to do. He really does not trust doctors at all, and thinks that our family is none of anyone's business; and that we should just all sit down to discuss things ourselves. My siblings and I all have major emotional behavior patterns of isolating when we are sad or hurt, tuning out when people are talking, and not knowing how to recognize, describe, express feelings or reach out for emotional support, as we never got it from our parents (and still don't, as they don't seem to know how to offer it). Our mother I am not sure if she has Aspergers or not, but she just mirror's my dad's emotional/communicative behavior. She is able to listen and have a back-and-forth dialogue with, but she also tunes out sometimes if I'm talking to her. I've been working for many years to learn how to recognize, name/identify, and share my feelings, and I've also learned how to listen, to be attentive, and to respond with empathy. I did not learn any of this from my parents. It is still difficult for me that they do not know how to do this, and that my brother does not either.

Sonny said...

My parents and brother actively avoid emotional conversation, especially when it comes to sharing their feelings. My experience of my father is that he just doesn't agree with my emotional experience. This is all very painful, and makes me very angry. The most healing has happened for me when I have learned ways to connect with other people, and these people have been friends and partners. However, I find that I somehow wind up in romantic relationships with people who are emotionally abusive. Does anyone else experience this? I don't think I've had a relationship with any Aspies, but I seem to be attracted to people who are emotionally expressive, which I think fills a deep need of mine that was never met in my family of origin, but which seems to come with other trauma.

Thanks so much for all of you and your participation in this conversation! I'm very curious to hear about other children of Aspergians and your emotional lives.

deirdre said...

Thank you for posting this! I'm 22 years old and just began noticing something off about my dad in the last couple years. He's always been a loving father and I think his passion is being a father. When I left for the service I was stationed away from home for 2 years, and when I got home (served in the Navy right after high school) I was old enough to figure out that he wasn't ...hate to say this but normal. When you're younger it's hard to think anything could be wrong with a parent you love and look up to. And it's hard to be patient when a loved one is socially repressed, introverted, and a tad slower to understand something.

I don't know what to do to help him b/c I'm his only daughter and I'm getting married soon, and will be far away from home. How can I reach out in the next 8 months without being COMPLETELY obvious that I know what's up? And is it a bad idea to confront him about his condition?

Angie said...

unbelievable. i am in the process of having a truly emotional, gut-wrenching, life-altering revelation that i am the child of an AS parent. i have never been so certain of anything in my life and now i don't know what to do with it. i also feel certain it's a pointless endeavor to approach my now 71 year old mother with this fact, or my almost completely fractured and estranged family, all of whom have serious rage/and/or substance abuse issues. there is serious dysfunction, pain and resentment in our family from just about every angle. I am adopted and myself have ADHD, truly the most horrible combination of traits for a mother and daughter, just the right recipe for disaster.

the sorrow runs deep; the anger even deeper. the devastation of trying to nurture my own marriage and raise my own children to be happy and secure and seeing so much... so much i promised myself i wouldnt pass on but know no other way!

i have no idea where to go at this point. it does give me some comfort to have something, SOMETHING that for ALL these years (34 years) i've struggled and YEARNED for some explanation..something black and white. i'm convinced nobody could truly understand what it's like growing up with this and the impact it has on future generations. it's been like a deadly virus in a way for our family.

so, now what???

Doris said...

Heartfelt hugs to you Sonny, Deirdre and Angie.

I'm from the point of view that knowledge of the situation takes the sting out of it when coping with situations that continue to occur. I am not sure if help can be achieved and that the way our parent or parents operate might not be changed. But I wouldn't want to be negative and always hold out hope that it could benefit some to know and to look at it.

At least knowing when something horrible happens that it is not really personal and it is not your fault can help immensely. Some things still hurt badly and their behaviour can be really unacceptable but I think there is no point trying to change things that can not be changed.

From knowledge comes some sense of relief for you. As for repeating some of the mistakes on our own children, well we can only do what we can do and try not to beat ourselves up about it and to continue to try to do better. I've made mistakes myself (not because of Aspie traits in myself but as a result of my own pains and experiences) but my kids and I seem to be surviving those and turning out much better. They are very aware of the grandparents behaviours but they are not as subject to them as my generation and I am hoping that the tide has turned. I am also lucky that they have not biologically picked up the same condition.

To finish: I would not confront about any such condition as what is to gain? And who is to say we are right either? I take comfort from what I can. I have read of Aspie people who have realised and recognised it in themselves and learned strategies to cope. But unless I was fully equipped to be there (say it was my own child) then I am not sure I would confront and try to help.

Hugs x

PS Once posts are a certain age then they are moderated when you post so it may be days before I see a post and accept it. Sorry about the delays.

Wil said...

As a parent with AS I find it interesting and gut wrenching to hear stories of children of AS patents. But I hope it helps me get the motivation to learn the skills to do a better job with my children.

Doris said...

Hi Wil - I am pretty sure you having an awareness goes a long way to not being that bad with them? After all, as a parent without AS I have managed to screw up along the way, though we seem to have survived. I am a great advocate for parenting lessons and taken them myself. I bet you will be great. Hugs xx

biddy.chambers said...

Hello, all the comments re parents with aspergers mean so much; thank you to everyone for them. My childhood was so dysfunctional & I've been having therapy for a long long time. Only recently (i'm 53) has it been suggested that my mum may have aspergers. This blog confirms it! To see it described as "madness" feels both accurate & judgemental, so difficult. I've done enough of the emotional side of life to compensate for my family's inability to connect emotionally. Their lack of empathy is, for me, the hardest part of it.
Hugs help so much; big thank yous Doris!

surelizzy said...

I just stumbled onto this post and I'm so grateful I found it. Thanks to everyone for sharing your experiences.. I can relate all too well and it's nice to not feel alone. My mother has aspergers and I'm still coming to terms with it.

Doris said...

Thank you Biddy and Surelizzy. Sometimes I forget the madness and try to normalise it, or these days at times am expected to make it less than what it was. Sure we can not wallow in self pity but it is not even that: I think it is about having some sort of recognition. It was awful and it was something to be survived. There is nothing to be shown for the scars of our youth - invisible scars. Hearing about other's experiences does help.

My mother has recently died and I am still going through it. Actually, more than ever. The only thing I can be sure of now is that unfinished stuff with my mother will always be unfinished on her side. She will never acknowledge it or say sorry. I don't know what I want any more or what I feel.

Angie72524 said...

Wow! I just read my post from Jan 13 and gut-wrenching just about sums it up. It was very helpful to read my own words and see where I was 6 months ago, having been at the beginning stages of this discovery. What a journey is has been for me. I'm happy to report that I'm in a much better place with everything, and even made the decision to discuss with my mother this week, which felt like a huge weight lifted off my shoulders. Bless her, she tried to be open to it, she did, but there is a massive disconnect from reality with her and no sense of self-awareness whatsoever (coping mechanism.) So we've come to a bit of an impasse, but, I feel confident and hopeful) that over time, it's something that we can work out and experience together. As I am discovering that I too display AS traits, I'm hoping she doesnt feel attacked. What's interesting, is that at age 25 I reunited with my birth mother who was diagnosed (or assumed, if not informally) with ADHD, as I myself was (as a young child). We were stunned to find that we exhibited not only physical similarities, but also mannerisms, personality traits and even emotionally are just bizarrely (sp) alike. Sadly, we have been unable to maintain a arelationship and as I've been on this AS journey with my adoptive mother, I've determined, by some strange twist of fate that my biological mother also exhibits AS traits. It sometimes feel as if I'm riding the AS train at the moment and I'm just assigning it to everyone in my life but it's been a truly eye-opening, albeit painful(!) but very liberating time in my life. Coming to terms with things about myself, and also explaining a lifetime of well, suffering....just knowing THIS IS WHY. WHY. it's just been healing beyond words. hopefully my mother will be able to come to terms with things on some real level even at age 72, so we can spend some real time together, i want it so badly. we are even going to try counseling together. my best friend thinks my expectations are too high. but i must have hope because otherise i will live with a lifetime of regret for not trying. i hope my journey continues to bring be further understanding and peace. Doris, I want to thank you so much for this blog. There is little to NO information on being raised by an Aspie parent, I know over time that will increase but your words and others here have been reassuring to me on many occasions.

Doris said...

Gosh Angie, I do hope I will hear another update from you in due course. Hope is everything and at least you will know you tried. I take my hat off to you for broaching the subject with your mother. I can imagine that must have been very scary at first. It makes me think whether I should either have been braver or whether she might have coped better than I expected so that we could have had some sort of a meaningful relationship, but I didn't and she has now passed. And I'm OK with my decision too. In fact her death has put a whole new spin on things. It doesn't take away what happened or the pain but something looks different, not sure what yet, it just is. As for you, I am so delighted for your efforts. It may or may not produce anything but at least you are trying and who knows. Please share again when you can. Mega hugs and best wishes to you. xxx

Aspiedistra said...

I am a parent with AS. I wish there was a guide on how to be a good parent when you have AS.

I am lucky because I can show affection and listen to my daughter who is 4.

However, I really am struggling with the social side of things. Getting close to other Mums at school etc. I am ALWAYS the one on my own at the sidelines while my daughter plays. It means she hasn't had many friends over for playing/tea. I just clam up and want the ground to swallow me up or to just disappear. I am terrified of groups of people (I consider 2 women a group!).

I just get very concerned about the lack of opportunities she gets to socialise because she has a Mummy with serious social issues. It's not her fault. I have always had socialising problems and problems forming friendships.

She has no cousins or anything, and it's just older relatives in our family with no more kids on the horizon for anyone.

I never meant to have a child (purely because I knew I wasn't right) but I love her very much and want a happy life for her.

God, I hate being like this and wish there was a pill to make me normal. poor kid!

Doris said...

Hi Aspiedistra

What a great name!!!

Someone emailed me the other day about being an Aspie herself and parenting a child and was looking for some information but found it very difficult and the information seems to be non-existent. I couldn't help either. If someone can help and post some ideas here I could see about putting some of those links into the post above.

Back to you Aspiedistra - I don't know if this might help to know but I think the situation you described with other mothers at school can be the scariest for even the most outgoing of mothers. I am reasonably outgoing and yet I can identify with that feeling of wanting the ground to open up and swallow me! You are not alone and if you can remember that it might give you some courage.

You say at the end that you hate being like this and yet what you have described is someone who has overcome some issues to be able to very much love your daughter, show affection and listen to her. My goodness, how I wished I had a mother like you!

We do have relatives and cousins in our family but my mother kept us away from them on the whole. Then we moved from school to school every two years which meant that none of our own relationships could develop. Admittedly I had siblings, though one of them did his best to beat me up all the time.

Back to you though. When you are in that playground do not attempt to walk up to a group of women! Even if there are only two of them. I couldn't and I am supposedly a "normal". Instead, look around and you might see someone else on their own. Flash them a smile, or a tiny wave and leave it at that. They might just be grateful of you being nice in that way.

I know Aspies are not too good at small talk but try and think of a few one liners that you can remember for such a time. Something simple like, "What a lovely day" or the simplest of all "Hi" and try not to worry about what next. Just do not walk away and stay focused on watching your own child. Stay there and discover that the ground will stay solid. The other person might say something back or they might just smile in acknowledgement. Another time, you can try it again to the same person or to someone else. It is a little game that I think we all play but in non aspie people it is speeded up and never explained.

Anyway, from those tiny steps come other steps that might lead towards friendship and possibly friends for your daughter.

The other thing I want to share, is that when my son was little I was on an outing organised by the nursery with the other mothers and their children. I didn't know any of them (I was new to the area) and walked along on the outside of groups looking interested but not being part of them. They were all complaining about another mother there whose child kept crying. No-one was helping her, just complaining. So I wandered off over to her and walked along with her and said hello. We got talking and one thing led to another and 16 years later we are still very good friends and we have babysat for each other and our children have played together. But I didn't know that could be the outcome when I first went to speak to her.

When you stop being so scared and look around you will find little opportunities for you and your daughter. Yes it is hard, and it is probably harder for you, but you can do it. You already are.

Happy wave and big smile to you. xxx

One Fine Weasel said...

Hello to Doris/all the commenters.

I found this blog today after googling 'parents+aspergers'.

I spent 40 years of my life loathing my father. His foul irrational rages, his stupidity. There was no reasoning with him, no 'normal' conversation, no humour, no love. He was a coward, a bully, a control freak. He had no friends, no social life, spent the evenings ranting about how useless his workmates were. Everything he said was negative. You couldn’t argue with him – his word was law. His chief interests seemed to be reading, crosswords, criticising, pontificating, and shouting at the telly. I felt invisible, ignored, and terrified.

After my mum died in 2005 I ceased all contact with him. Then I heard about this Aspergers thing. I researched it, but didn't associate it with him - I thought my boyfriend at the time might've had it. I also tried counselling, but the bitter disappointment didn't go away.

In 2009, the rage subsided suddenly one day when I just realised he'd done the best he could with what he had. Sadly, his best was still rubbish.

Last year, he got sick and nearly died. I realised then it wasn't just his family he didn't know how to care for - he'd just ignored his symptoms until they nearly killed him. I saw him properly for the first time in years - a ghost, all his rage and pomposity gone, he looked like he was made out of dust. It shocked me how frail and vulnerable he was. All the 'power' he'd had when I was younger had vanished. I opted to look after him when he came out of hospital.

His ignorant, self-centred yet strangely naive behaviour was still excrutiating, but I was more detached from it than I had been. It was clear he literally had no understanding of the impact of his words/actions on the world around him. Then one day last month I had a lightbulb moment - it HAD to be AS.

I've read everything I could about AS, also personality disorders, mental illness, emotional abuse. After my lightbulb moment, I realised only AS truly fitted. I have no idea why it took me so long to realise.

Doris, you said knowing "doesn't stop the madness but certainly makes it somewhat less baffling and frightening." Yes, yes, a thousand times yes! I don't think he'll ever be diagnosed but the certainty I feel has finally slain the dragon: I'm no longer mourning the relationship I never had.

Thank you for sharing your experiences and thank you for allowing others to add their stories here. It’s such a relief knowing I've not been the only one struggling to comprehend the incomprehensible. I'm glad I found you today.

Aspiedistra, my google search also threw up this forum thread on Wrong Planet - 'Raised by Aspergers Parent'. I read all of it and think you may find something useful there (you can skip the ones on the early pages about spanking as they're completely off-topic): http://www.wrongplanet.net/postt87678.html

Wrong Planet looks like a great website. It's a shame the Alien Parenting link above no longer works as I'd loved to have read that. There really doesn't seem to be too much out there on this particular topic.

I've blogged about various episodes with my dad over the past year; I try to keep it humorous as my blog's meant to be lighthearted but it's been difficult! Just a way of getting stuff out of my head before it explodes really.

I was sorry to hear about your mum. My dad will too go to his grave unaware of the harm he's caused. But what can you do apart from remember that old prayer: grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference. Healing's possible.

Thanks again for your very wise and generous words.

Much love x

Doris said...

Dear One Fine Weasel

Thank you also for sharing and for the link to the WrongPlanet topic. I have written on your blog and hope others will find their way there too. There is a comfort in beginning to realise we are not alone and have never been alone despite how it felt or feels.

On your quoting of the prayer "Grant the serenity" etc I have to say that something has shifted in me as regards my father. He was the abused partner who did not protect us, he may have also been a bit AS too, but since I never tackled anything with my mother before she passed and she never apologised, it seems rather churlish of me to continue to hold a grudge or anger towards my father for his failings. Healing is possible and I rather think it has to start from within us.

Sharing the love! xxx

mrs-grumpy2010 said...

I will be 39 next week and, after an entire life of not feeling quite normal I am beginning to think I may have AS. I have been thinking about this possibility for some time and have done an online Aspie test which said I was "very likely" an Aspie.

Sometimes I feel normal. When I am at home in my comfort zone, with my husband and children, I feel normal and happy.

But I hate social situations, dislike women, and I can only relate to men sexually. I used to work with a group of men, Most of them hated me for being clever and the ones that didn't, I flirted with. I don't understand people who don't say things that are not true, and not being believed frustrates me beyond all measure.

Last night my husband and I had a massive huge argument. He had mistaken my reaction to something he had said and thought I was "being funny" with him, when in fact I wasn't. I tried to persuade him, but he refused to accept it, and his refusal to accept the truth sent me flying into a huge rage with him. I threw things at him and insulted him and screamed at him to get out and swore at him.

The second he left the room I calmed down instantly. Instantly. Because he had finally done what I wanted - left me on my own.

But I realised that this behaviour was not normal, which led me to re-visiting the possibility of having some form of ASD, and eventually led me to take the Aspie test, which gave me the diagnosis I had previously mentioned.

I went downstairs and we had a very calm talk and I told him what I suspected. He said that if that was really what I thought I should go to my GP and get a proper diagnosis.

It affects us mostly when we argue - I have frequently told my husband that I don't know "the script" - The things I say are "wrong" somehow and I don't know what it is I am SUPPOSED to say so I lapse into confused silence, which annoys him even more.

I found this blog because I have two children, aged 3 and 10. I love my children deeply and am able to show it. But my older daughter sometimes complains that I don't show her any sympathy when she is hurt or upset. It isn't that I don't feel sympathy and feel bad for her, I just don't know what to say. And that makes me feel bad because I am making her feel bad.

Thank you for letting me blather. The thought of having AS is scary - I don't want to have a mental illness, but almost a relief at the same time - that there is a reason I am the way I am - I'm not just a callous bitch with no friends.

Doris said...

Gosh MrsGrumpy2010 I just want to give you a hug but I think I'd horrify you by getting too close! A big thank you to you for writing and sharing from your point of view - it is a scary world. I read what you have written with great silence in me, feeling the confusion and pain, and thinking of my own mother and how she might have felt. Your self-awareness is quite something and because you are voicing all this and aware how you may be affecting others I wonder that there is so much hope for you. It will be interesting to see what others may feel when they have read your side of things. I am sure it will be helpful.

Oh, and as for this whole mental illness thing, well, some of my best friends are diagnosed with a mental illness! I say it like that on purpose. And at times I am sure I have periods of time with a mental illness, and we all have times where we need to nurture our mental state. Thankfully society is becoming more understanding about our differences and needs, but we still have a long way to go.

Me said...

Try having the effects from an acquired brain injury (from 9 brain operations) on top of having an older brother, a mother and possibly a father (who has been deceased for many years now) who all have textbook aspergers. I'm telling you it certainly becomes one BIG mixed up world! Learning to reframe is a must. Moving on is also a must. Thinking of life as a series of learning curves helps a bucket load. We gain strength in life from dealing with challenges and adversity after all. Somewhere in the wider scheme of things we are fulfilling our place in the universe, hard as it may be to think that way. Through our experiences we help others (maybe through sharing, maybe through being an example for others to reflect on good or bad, etc.) All up plan your life as best you can in a forward progressive way, and let the universe put you where you need to be in life to deliver the message that it wants you to deliver. YOU are the person for the job which is why YOU are in the position that you are in. While we tackle things in as healthy a way as we are able to, the rest will fall into place however it does. Accept WHATEVER the results are (even if they aren't as we would wish) and MOVE on with PEACE in your heart. It is your LIFE which is limited that you are living. You get one crack at it so do the best you can with the time you have available. No regrets, just forgiveness trying your best and moving forward with understanding.

Love to all, Me :)

Me said...

p.s. My fluctuating life has created some amazing opportunities as a direct result of characteristics (genes) which were probably passed on through aspergers amongst other things. Nature evolves through genetic variation and survival of the fittest.. The unique qualities of having aspergers within our ranks sets us apart from the norm in creative ways. Embrace that uniqueness for its creativity.

Please forgive the past. I also share your deeper understanding from a first hand perspective but know forgiveness overcomes all. xx

Doris said...

Thank you "Me" for sharing. For going right to the heart of it and sharing the love. I agree that forgiveness is where it is at - the way forward and for healing. It is also a very difficult concept and yet so "easy" as it happens in our own selves and requires no-one else to do anything. I should think would be very difficult if one is still living in the midst of all the craziness.

You've been through the mill quite a few times! Gosh. And hugs. xxx

Me said...

Hi Doris,

I don't know if this tidbit helps any or not, but here goes nothing.

A totally unexpected thing happened to me the other day. Due to a series of totally unexpected circumstances, the Dalai Lama shared some of his wisdom with me after giving me a wonderfully compassionate hug.

He said if you can do something about a situation, then go about doing it, however if you can't do something about a situation, don't worry about it; let it go! That simple! Let the past be just that, the 'past' and free up the space in your mind to create and enjoy the present as you choose to shape it. Life is finite after all, so give yourself more quality time by choosing to flick-the-switch in your mind to choose to enjoy it, regardless of the past.

Go on to live as truely to yourself as you can (be the best that you can be as a human given your own personal circumstances) while extending compassion to those around you unconditionally regardless of the past or present.

Amongst other things the Dalai Lama has taught/ conditioned himself to keep a positive outlook on life REGARDLESS OF WHAT HAPPENS! With dedicated practise he has conditioned his mind over time to be positive (with few exceptions).

I have practised similar exercises independently of any religion, and I was pleasantly surprised that after 3 months of reaffirming positive ways of viewing the world, I automatically reached for compassion and understanding when I was faced with a situation that deeply challenged my patience and understanding due to other peoples actions.

Much to my surprise (and delight) I felt like a reformed addict as I no longer resorted to my old line of comfort (feeling defensive, angry, blaming, getting sad and upset etc) to deal with a situation. I infact felt major relief as the situation felt as if it was simply bouncing off me (virtually as a non-issue). Each challenge is now welcomed as a learning curve with compassion and a bring-it-on attitude, instead of a negative issue.

Yes in the moment, that may mean taking some flack on the chin (not literally) while you let a person get stuff off their chest or they temporarily take their bad day out on you, however, with practise this will hopefully become less frequent as you become more known for drawing boundaries and sticking to them; if you aren't already my friend. I personally like to use humour and thinking outside the square to find solutions to problems when I can.

Yes, I agree with you Doris, it's easier 'said' than 'done' to let go of the past when we are in the thick of things but hang in there and keep practising the mental exercise of 'letting go of the past,' as it's most certainly worth it over the longer term - I can personally attest to that and goodness have I been through the mill and back! I may feel alone every so often, but I know that my friends and the Dalai Lama etc are but a thought away. We are all connected by thought waves. My thoughts ARE WITH YOU now!!! :) Love to all - Me

Me said...

Massive Hug Doris! My own mother is still alive. Even though my mother and I are on very different wave lengths, I refuse to let her comments get under my skin, or to throw comments back in retaliation. I have come to accept that she is coping by doing as she understands 'within her own cognitive world.' I accept mum for who she is, good, bad and otherwise. I still love her very dearly. She simply doesn't know how to think on a different wavelength.

It sounds like DUE to your own mother, you have taught yourself a LOT of things about the world in which you live, and understand things from a wider perspective than your mother did. It sounds like she has motivated you (in one way or another) to reach out to help others, therefore your relationship with your mother has had an amazing deeper purpose. She unfortunately isn't alive to share this beautiful revelation with, but at least you are aware of it, in her honour/memory.

Thus generations continue transferring elements from the past into the future. How will your own unique history be passed on in order to continue to shape the future?

Doris said...

Cooooo I am just one virtual hug away from the Dalai Lama! :-D

You know, in my 20s, before having children, I came to a point of incredible being. Through total forgiveness and intensive working at meditation I was able to truly let go and felt such a sense of peace and oneness with the world that I almost flew through life for a couple of years. Then I do not know what happened but I lost that ability to meditate.

By my 40s I was happily married to a man who delighted in me and took on my two children. Yet sometimes at night I'd have nightmares taking me back to my childhood and wake up crying and distressed.

The forgiveness is where it is at, but also there is damage too. You speak of love for your mother and I am afraid that I am resistant to such terms with regards to my own, and yet by my own actions in her final years it would seem that I came from a point of love. I am also resistant to thanking her or the world for the deeper purpose I have gained from our relationship probably because she had already rammed that idea down my throat. We grew up on the idea from her that "we choose" our parents ergo we must have chosen her.

I think that there is something in me and something in each of us that helps us to survive despite it all. Something quite fundamental. And this is going to sound awful but I'd rather honour that unknown than my mother. Oh dear that does sound awful. Possibly at the heart of that, isn't anger supposed to be a normal healthy part of an argument or relationships or something .... I never expressed anger to my mother (apart from a small incident on behalf of someone else) and I can tell now that I am holding a lot of repressed anger. Despite all I know about forgiveness! Meanwhile, just recently, several different clients (I am a now a beauty therapist) have told me of the calm I bring to their lives, enabling them to be calm and to nurture. I feel like a Jekyll and Hyde character not that anyone sees the dark side of me. I feel like my journey continues.

You have been very kind with your words and I will re-read and try to listen to the good you have said. I wish I too could use humour more to deal with conflicts as I know that is so good in deflecting situations but time and again with my children I seem not to manage it as my own repressed anger speaks instead of me.

As for our legacies that is an interesting thought. I'm not sure if I have mentioned in earlier comments, but at my mother's funeral not one word was said about her personal legacy, or something people would miss. I find that so very sad and would hate it if the people around me did not have anything to say about me personally when I popped off.

Thank you for sharing your strength and love. A big smile and hug for you. xxx

Me said...

Hi Doris,

Oh oh, I have written a manuscript accidentally. It would be very rude of me to be a gluton with space on your blog. Maybe it would be best if I emailed the post since it touches on some points which I'm not sure if you are already aware of.

Curiously so,
- Me :)

Angie72524 said...

Hi, I've been doing some research and found some information on the effects of children of Asperger's and boy oh boy I found what I was looking for. This is ME and MY BROTHER...this is the explanation and validationg I've been seeking.

http://psychology.wikia.com/wiki/Emotional_Deprivation_Disorder

Emotional Deprivation Disorder.


A lot of online Pro-Aspie folks are labeling this stuff as garbage, but for our family it's 100% accurate. The emotional effects have been devastating to my family, the trickle down effect to the grandkids is undeniable as well. Growing up with an emotional disconnect and neglect, lack of perceived love and affection, intolerance, and neverending critism -especially from a mother, has an effect on the of a child's emotional development. These are the things that are long lasting and have become difficult if not impossible for me (and other family members) to overcome. I've spent my life self-loathing and wallowing in my grief... (wahh) but it's just a lot of pain and i've never been able to move away from it, however much I try. I say to my husband "I'm broken". All I can hope for is continued awareness and an exhaustive lifetime spent "trying to Fix myself" ughh. and lots of therapy. ha

Doris said...

Dear Me - I hope you saved your manuscript as I do not seem to have it in my inbox. Please go ahead and post it here if you feel OK about that as I think I don't mind if it touches sensitive points. The thing is, it might be useful for others too.

Dear Angie72524 - am going to look at your link before responding further.

Doris x

Doris said...

Hi Angie72524
I've just had a read of the Emotional Deprivation Disorder (EDD). I find it curious when other people label such stuff as garbage and just completely dismiss it. I came across something the other day where an Aspie parent had taken offence at a listing of Aspie traits that included things not on her spectrum but may be on others. I can understand her offence but to dismiss it is to undermines other people's experiences.

I must admit that I do not identify with the EDD but I did think the suggested healing through validation from a trusted parental type figure could be relevant to me and is so blindingly simple! In many ways I have seen the way my calm and gentle Mr Doris handles life and I have learned so much - in a way like the parental type figure. Despite that and the years of trying to fix myself I still have an unfairly short fuse with my own children though nothing like my own mother.

I can identidy with your self-loathing and wallowing in grief and yet, for anyone looking in I am one of the most smiley people out there and generally sunny. I feel that "broken" thing too but I feel less broken as I get older. I wonder if I will ever feel whole or OK or even "enough" though I am optimistic.

George Michael song comes to mind .... "you gotta have faith" not in a religious way but in yourself and the future that it WILL get better.

Thanks for sharing. x

Me said...

Dear Doris,

Cheers. The manuscript is safe and sound thx. You wouldn't have known what hit you if I didn't give you fair warning it was coming. *lol* Since it seems relevant, I am posting Version 2 below first. (I did say I use a sense of humour to get me by after all.) ;)

My computer is slower than the tortoise in 'that there' famous old analogy! To complicate matters, my own ongoing brain injury processing issue(s) means every post that I send has likely taken me a long time to write out while I go over-and-over it to remember my flow, concentrate on what it is that I am trying to say and make sure any post is received as it is intended/read etc.

There are often heaps of repeats in any message until I can find them when I'm editing sorry. I try to take out as many as I can find as I re-read.

THEN I have to cross my fingers that the message either saves or sends on my antique computer. Any distractions and I have to start over to remember what it is that I was doing. Thus not always finishing what I start since I don't remember what it was that I was doing in the first place *lol*. Blah blah blah! .. Oh yes, and learning not to always send things straight away for the said reasons above. :)

Sure makes life interesting I tell you!! I'm sure you get the idea of my pain staking slowness anyheys. Profuse apologese. As it happens, that is also why His Holiness had a chat with me etc.

It just goes to show that when we do our best under ANY circumstances (including when we have a slump in life {i.e. emotional crash, depression}), Life still has us following and part of a broader picture whether we realise it or not!

WE are constantly scultpuring our 'very own' learning curves through out very life experiences good and bad therefore, so WHOEVER needs them can draw upon them to help others (either immediately or down the track sometime) at EVERY point in our life.

Yes, we are ALL forever both 'learning' from EVERYTHING we do as well as 'giving messages' to help others learn (how 'to' and/or 'NOT TO' do things etc). Like a massive constantly evolving alive-jigsaw-puzzle where everything and everyone interconnects over the grand scheme of things - Life, The Universe and Everything kind of stuff! Bring on The Monty!!

Everything falls into a Universal place and purpose in the wider scheme of things in every moment, since the Universe 'just is' and is dynamic and constantly morphing (e=mc2 where Energy In (must) = Energy Out).

Amazing stuff huh!? It all has its wider place in the scheme of things, as I describe above, so I just do my best (even when I loose it with frustration *lol*) let it happen, and don't fret about it even when my life sometimes comes to a sudden holt temporarily. I accept it for what it is without fighting it.

Fighting your true feelings when they happen after all, causes its own issues such as supressed feelings down the track.

For the records, I don't plan the 'slumps' when they happen but I can minimise them happening by sleeping, thinking, eating, believing healthy things etc as often as possible while I AM able to hold my own still emotionally etc.

Accepting my true emotional state doesn't mean that life is perfect and the slumps won't still happen on and off naturally either. One of my specialists suggested I 'celebrate' every time I fall into a slump! Yes, actually CELRBRATE!! Do something like buying myself something small, weird and wonderful or doing something like getting a massage or haircut etc to acknowledge the feeling so it has its day and can move on.

Grreaat idea! Just have to pick yourself up to get out to do it - make it a rule when you are feeling really glum to celebrate with a massage (or something similar.. maybe a bowl of fresh prawns or whatever takes your fancy - I love a good chicken and lemon grass soup (Tom kai ki) {~slurp!} from my local shopping centre!!

to be continued..

Me said...

..con't

The key is to catch any wayward thoughts and wear them out by thinking deeper than they are presenting. Consciously redirect wayward thoughts by forcing them to take the opposite stance to what they are doing in the moment! Treat them as you would a tired child. Respect mixed in with reverse psychology. We are 'allowed' to feel down - it even has a psychological place - so why not enjoy it (in a healthy way)!

By doing the 'opposite' (even when it feels absolutely beyond your energy to do so) to what you "feel" like doing when you are feeling reeeally down , you start to increase your history of being able to draw on good times, and reduce the established history of 'remembered' feelings from the 'glum' times.

Thus is a start to building new cognition towards reducing the longitivity and strength of the 'bad times' (as mounting history builds in either a good or bad way, it can become a conditioned self-fulfilling prophecy if we keep repeating it over and over). The trick is to trick new healthier patterns to form slowly as you catch the old self defeating conditioning kicking in.

This is a conscious choice that we need to make ourselves that is somewhat challenging at the very time that we feel hooked to our cosy corner.

Maybe also remembering that every thought and consequential action that we make has a longer term impact on organs such as our brain, heart, liver, kidneys, lungs etc in one way or another over our life. These are accumulative like the sand at the beach.

Accumualative good habits pay off royally in senior years with respect to our health. Heaven help us all with the demand on our future hospitals and health system/s.

Since 'depression' can almost feel like it is addictive when it happens - ironically feeling like a familar friend and a place of comfort - , it needs to be welcomed as being a real feeling before it can be dealt with in a healthy way.

Yes I've felt depression many-a-time, through amongst other things, the disappointment and solitude from not truely connecting with people, due to being too slow to keep up in life; which is near unbearable!

As you might imagine, keeping life together when I know what I want to do and say, but can't do it quickly enough before I either forget or my computer crashes, is very frustrating. It takes quite a bit of oomph (mental energy) to get it to all come together. THUS please bare with me while I regather. Regarding not sending Version 1 manuscript straight away!

.. to be continued ..

Me said...

..con't..

Although 'le manuscript' is saved and virtually ready to send, my psychological cup is just too full at the moment to go back over it and finish sending it at the moment - brick wall kinda stuff..

Please bare with me. I've crash landed with a building overflow of things needing my attention at this end sorry.

Dem's the breaks with brain injury, over-stimulation and processing issues etc etc etc.

When my 'cup' is too full I need to wait to come out of hibernation (myyy woooorld slooows dowwwwn somewhat and I have to take a step back to pace myself and regather).

I will forward my scribblings once I recollect myself. It's just too much to deal with to look back over it right now.

Ciao for now,
-Deary Me ;) (again) xx

p.s. At times like now, I am eternally glad that I have built my 'tool box' of wisdom, tips, understanding, patience, etc to draw from when I need it.

I also understand that gut wrenching feeling of not belonging and not feeling like I connect with the world etc - alien feeling all over that never goes away!

I stick to using a 'safety net tool box' whenever I fall and accept that life is what it is and that my fluctuations are part of what makes my creativity what it is and my being able to touch base with the people who I need to, how and when I do etc etc.

In essence, 'everything happens for a reason.' As long as I just keep doing the best that I can under any circumstance nature will run its course. That includes knowing how to pace myself, draw boundaries and take a step back when I need to so as to employ regathering techniques to get going again. Breathing in!!

Take 5
Me

Me said...

p.s. Doris (& everyone else on the blog)

:)

Now doesn't that feel somewhat better!

Doris said...

Umm am I right in thinking this isn't even what you intended to originally post and yet this is a feast in itself. I have read it twice now and read even more the second time. I am so glad you have posted this here to share, and not just to me personally in an email, and what is wonderful is that in this you do not once mention the past or any whys or wherefores but some really good strategies for coping with life and depression and the difficult times. How we can take action and not at all about wallowing. And yet it is written without being dismissive and if anything, it is about being open and accepting of the past and thereby letting it go.

Your strategies for coping with the mechanisms for writing are quite something and I thought as I read it, what about on top of all that all those insecurities one can often have about oneself and what one is saying but I should think that after all the cross-checking and care you have to take because of the brain condition whether you then feel calm and centered about what you have written because you have had to check it to the nth degree? Sometimes I can feel like a fraud or that I am making it up or talking hot air even when I might come across confident because my strategy is to still "do it" despite all the inner angst and also not to reveal that I may feel like that. Hence when I see people writing or speaking in a timid or apologetic way I like to encourage them to be bolder and that they are worth listening to too.

I like your ideas of celebrating the dark times and doing something completely off-ball such as celebrating it! And for what it is worth, I like that type of soup too and is the sort I would not make so it would be a treat and easy to just buy a pot. And I bet those zingy Thai flavours would shake anyone up!

I like the idea of a tool box of wisdom :-) You say it all in your last paragraph about the feelings that never go away. I suppose it is better to not fight it when the feelings get overpowering and I reckon I do a lot of fighting at those times instead of deflecting it off in a different way.

Thank you for sharing especially as I know it was not just a quick running up a few words on a keyboard. Please know that you have impacted me in a positive way and that I shall carry a little of you always and perhaps you are key to my next stages of growth and change. So thank you again. And I just know that others will be reading this and will find ideas they can work with too.

Meanwhile, have a beautiful Sunday (assuming you are on the same timezone) and I look forward to hearing more from you when you can manage it.

Doris x

PS It is deeply interesting to refer to you as "Me". LOL Makes me chuckle really :-D

Me said...

:) Just Me. Gee whizz, thank you for such feedback Doris. Glad my words have been able to help, if any.

I speak from years of deep first hand learning curves mixed with advise over time from some pretty amazing mentors (not the least being The Dalai Lama).

It takes a balance of learned experience after all to truely relate and to then pass on sound wisdom. Patience mixed with a deeper understanding of things really are brilliant virtues.

It also takes a combination of both positive and negative events, issues etc to learn how to deal in a balanced way with situations over time and learn how to react to best effect for the most progressive outcome for all parties concerned. This practise is called living and I there isn't a 'right' or 'wrong' way to go about it. Nature only thinks in terms of evolution with, 'Survival of the fittest!'

How can we survive if we don't learn how to deal with a balance of life issues? I say bring them on!! But one at a time would make life a bit easier thanks Mr Universe. ;)

Weird, but that means we actually "need" the negative challenges in our lives as much as the positive challenges in order to grow in a balanced way. That doesn't mean we go 'hunting' for negative challenges to strengthen. They will present themselves through out life regardless. It just means we accept them when (ever) they arrive and treat them like a randomly presented 'criptic challenge' where the prize is a growing amount of inner personal peace as you learn to navigate the maze of life.

We can't stop negative things which are out of our control happening to us any more than we can stop 'evolution' from occurring.

If we learn to deal with things in as pro-actively a progressive way as possible, then it will at least make the rougher times a bit more tolerable/manageeble when they do occur. Why NOT take the rougher times on as a 'healthy' challenge to strengthen the virtues of understanding, patience, trust etc - much like running up a steep hill in a marathon? You may not always be successful but by practising you will get better at achieving the best outcome more often. It makes sense to be pro-active (with positive coping techniques) instead of re-active over the longer term. The outcomes are so much better for each persons own peace of mind and quality of life if not also longetivity.

I keep a low key in life yet do my best to quietly help as many people that I can when they don't know how to find inner peace within themselves or when they don't have a voice to stick up for themselves in a harmonious way. Exuding peace and how to use sound conflict resolution skills gains inner harmony. Being reactive with the associated feelings that follow thereafter doesn't. The later also creates issues with the organs as life progresses, the former doesn't. I know which option I would rather so I know which line of thinking (and therefore acting) I have chosen to adopt through out life - with the exception of the veeery odd slip up that comes with being very human. :)

Bless Me!

Doris said...

Indeed! :-) Bless you :-D

Just been on the phone to my brother for an hour which was most interesting. Sad really. He doesn't seem to even begin to move forward and yet is somehow holding on. Sigh.

We can only do what we can do.

Hugs. x

Me said...

Bless you Doris! You planted a seed! That is a gift of love.

Someday under the right circumstances, your brother may remember (at least some of) your words and see things from a different perspective as he discovers his own healthy relevation and new way/s of looking at things therefore releasing himself from the past.

As he witnesses your own personal growth over time, he may be inspired to follow your lead or ask your secret etc. That will give you the opportunity to water the seed if appropriate by (re)sharing aspects of your re-formed mindset with him.

Resistence is normal when new ideas present themselves especially after so many years. Fingers crossed that he risks letting go of his old established self defeating ways before he taints the quality of his senior years.

Maybe he will infact do his own thing in a male way ! :)

Established behaviour patterns can be really hard to change when your whole life has been developed around them (friends, others behaviours, work relations etc) so here's with age comes the right kind of wisdom.

- Me

Carrie said...

You can be a parent with Asperger's and still be normal. I am. Read my blog.

http://parentingwithaspergers.blogspot.com/

Doris said...

Thank you Carrie, I am sure there are plenty of people out there with Asperger's who function perfectly well enough. Good luck with your blog.

As a note to anyone else, let me just state again that I would not dream of suggesting that having Asperger's means one is automatically a psychotic, out of control monster.

Carrie Cooling said...

Doris, Thanks for the reply to my comment.

Jennifer said...

Hello and thank you for this post. I recently learned about asperger's and an pretty sure I have it. Since I have three kids, this morning I thought I'd try to find some posts about parents with asperger's to see what the kid's perspective is, and found your blog here. Just wanted to say thanks for what you are saying, and I am sorry about your mom's passing.

I did not LIKE figuring out that I have asperger's; on the other hand it was a relief since it explained so many things about my life. I wonder if it's hard for people to accept a diagnosis because they associate asperger's with something bad, as if it means they are bad people. The lack of empathy is alarming, no doubt, and also very hard on others. It's almost like there is an "empathy organ" located somewhere in our souls that is either missing or quite small with aspies. This is how it seems to me. It's definitely NOT that we're withholding empathy, as if it was there and we are deliberately holding it back.

I wonder if my kids could write something similar as your post. Their dad has undiagnosed Borderline so it must have been extremely difficult. The eldest daughter is either borderline or narcissistic. I cringe when I think back on their childhood. Frankly it was abusive at times, especially for the eldest. It had to be so confusing.

As a parent I want to tell you that I am so very sorry for the hurtful and frustrating childhood you endured. It makes me really sad. You need the acknowledgment that your confusion and pain were real, and I hope I can give that to you, even in a small way.

Good bless.

Doris said...

Gosh Jennifer, thank you. I don't know why but your post took my breath away and I thank you for the acknowledgement you have given me. Thank you. x

Each of us copes with our childhood in the way that we do and possibly your own children, with possibly much less violence in their lives, could have suffered more. Or maybe less. You have shown me great empathy in your words. Perhaps if my own mother had been able to acknowledge to me what had happened, or what I had felt, it might have made life so much easier all round.

I think Aspergers can be wrongly associated with something bad, or at least like a deficiency when it isn't. There is a US comedy "Big bang Theory" which has a main character "Sheldon" one could say had aspie traits. I bet there will come a time when it would be politically incorrect to enjoy the comedy as it could possibly be at the character's expense, but on the other hand it shows a group of people interacting and getting on with life coping with the quirks. Some time back I read a news article that said that people with AS make the best call centre people as they are able to deal with the calls without becoming emotionally involved. I'm not suggesting becoming a call centre person is the pinnacle of one's hopes if one has AS, but I think it useful that the positives are being identified.

I hope you will find answers and acknowledgement too for what you have had to work with and cope with.

Hugs x

Ember_Write_Now! said...

I respect you, and I know that you had a horrible childhood, but I feel the need to point out that, like any other group of people, some make great parents, some make horrible parents. I am a single mom with a four year old daughter (who also has AS), and I am an excellent parent. Then again, even though I didn't know about AS when I got pregnant, I wasn't in denial about my very real challenges, and was therefore able to deal with them. For example, I knew that I would have serious trouble understanding what my baby needed when she cried-- is she tired? hungry? gassy? So, to compensate for my deficiencies, while pregnant I devoured parenting books to discover what general patterns babies follow at what ages, and memorized them. I knew that no two babies will have identical patterns, and I would be able to use these as general guidelines. Once my daughter was born, from day one, I logged every minute she slept and every oz. she drank. In doing so, I quickly discovered her natural patterns, and she was a very content baby. She does have AS, however, so she didn'/doesn't like being held much (that was ironically hard for me to deal with, as she is the first person ever whom I want to hug and hold all the time... and she doesn't like it, and never has). We are two peas in a pod, and have sooooo much fun together. Another thing I understood about myself was that meltdowns would be scary for a child... so I give myself timeouts when I need them. They work, and they have an added benefit I hadn't anticipated; my daughter doesn't fight when she needs a time out. She points out that "everyone needs timeouts sometimes, even you mama" and considers them fair because she sees that timeouts help everyone when they're overwhelmed. I am by no means a perfect mother, no one is, but I believe that half the battle is recognizing one's own challenges, anticipating them, and finding a way to work around them. The problems arise when a person can't accept/admit that they have certain challenges that most people don't, and therefore do nothing to improve, work around, or ask for help with them. I know, also, that I have trouble keeping up my apartment without using a schedule, so I have a whiteboard hanging in our apartment with my chores for every day of the week. Our apartment isn't perfect, but it also isn't too different than the homes of NT families I've seen with kids my daughter's age. If I didn't accept my challenges with keeping up my apartment, I wouldn't have the white board, and my apartment would look very much like it did 10 years ago when I WAS in denial that there was anything "wrong" with me, and it was too messy to let anyone but family in. I also didn't have any kids, and so there was no reason, in my mind, to change anything about myself. My daughter is a damn good reason, and I have completely changed everything about my life for her. I knew if I didn't I'd screw up her life, and that was NEVER an option for me. Aspies CAN be good, even great parents, as long as they understand their issues and work hard at making their child's life and well being their focus (and when we focus, boy do we ever focus!). Btw, I admit I'm afraid to post this, because I've seen, on several websites, parents with AS being attacked by people simply for being parents with AS. I know many have had horrible experiences being raised by an Aspie who didn't want to accept that there was anything wrong with them, but remember, one can't justly label all of us as "bad" just because you knew one or two people with AS who were real pieces of &$%*. Most of us aren't.

Doris said...

Hi Ember_Write_Now and thank you for being brave to post. Sorry for the time it has taken to accept the post which is purely down to access problems (which are ongoing) and nothing else.

I would not dream of labelling all Aspie parents as bad; or any category of situation. What makes me sad about your post is that you sound great in being self aware and, like a lot of people, tryng hard to do your best for your child. That shouldn't be sad but it is because of what could have been different in my personal situation.

I could stand here and jump and shout sayng this is all about me and I suspect that is why some people online can be so horrible when someone presents a different viewpoint. That is sad that some people can not discuss and discover - and they are supposed to be the NT ones!

I don't think anyone on this page has ever tried to label all Aspie parents as just "bad". Let me know if I am wrong on that score.

Sending big love to you and your daughter and to enjoy your lives together.

Doris x

Hillary Hutchison said...

Help! I'm 31 and I just found out that I may have undiagnosed Asperger's. I took the AQ quiz online and scored a 32. Then found a site listing traits of females with Asperger's. I fit it almost exactly.

I have 3 boys. My eldest has diagnosed Asperger's and my toddler is showing signs of being on the spectrum already. I also have a boyfriend with a very Type A personality who has endless difficulty understanding me at times. We fight a lot! I have big problems with patience and easily being overstimulated and overwhelmed. I can break down just like that. It doesn't help that my toddler and youngest are only 11 months and 10 days apart in age.

I've struggled all my life, feeling out of the norm, and being accused of not caring. I DO care! Deeply! As a teenager I would cut myself and do drugs to distract myself from the awful feelings of lonliness and frustration. My mother chalked it up to psychological problems and I went to counseling which helped a little, but they never caught on that I may have Asperger's.

As an adult I've had lots of emotional problems, resulting in hospitalization at one point. I've been diagnosed with borderline personality disorder, manic depression, and have been guinea pigged on many different psychiatric drugs. None of which has helped me for the long term. Not one iota! I also have sensory problems. My sense of smell is phenomenal and if I smell certain kinds of burning smells it causes me to have mood swings.

Admittedly, I'm not the nicest mommy in the world, and I can only hope to make up for it with extra hugs, kisses, and validation. But there has to be more. I feel sorry for my children sometimes because I'm such a mess. I'm hoping to get help for myself soon, and additional help for my kids.

Doris said...

Hi Hillary - sorry to take so long before seeing your contribution. What can I say? You sound great because you are aware and you are trying. None of us are perfect as parents, it is as simple as that.

Maybe someone else will have something useful to say.

Hugs.
Doris x

snapdragon said...

Hi Doris

Oh my ..... I've struggled with my relationship with my mum for well forever .. Lol .... I became a mum 2 years go & suffered with pnd & during counselling my difficult relationship came spilling out!! Everything people have described here has been my life with her, no emotion, no empathy, no interest in me & now no interest in her only grandson! Everything is about her & if it's not there's no interest. Poor social skills & inappropriate public behaviour!
I really struggle to understand how she can be so distant & especially to my little boy, I probably overcompensate to make sure my son never feels the way I do!!
I feel some relief that there's an explanation as for years I have felt it was me, why doesn't my mother love me? Why don't we have a relationship?

She's 70 soon & wouldn't respond to me telling her but at least I have an answer xxxxxÅ·

Doris said...

Hello Snapdragon

It helps to understand doesn't it and to realise it isn't your fault?

You say about over compensating with your son to make sure he never feels the same way as you did ..... well, my feeling is .... our kids will always have issues of some sort with us no matter how hard we try. (My kids are 19 and 23) So it is best to just do our best but not to try for perfection. After all, whose perfection standards would they be? I bet not our kid's! I had a school friend back in the 70s whose mother brought her kids up through the 60s in a fantasy life. By the 80s and 90s the psychological fallout when life was not as it had been growing up was enormous. Very curious.

If you read this message some time, I wish you well and so much fun with your beautiful child.

Doris x

Doris said...

Oh Carolyn, yours is a very sad and painful story to read. I can not imagine living through all that and how I would feel for my children being subject to it all. Thank goodness the children have you in their lives. May you have the courage to do whatever you need to do, whether it is to stay or to leave.

Hugs and strength.
Doris x

Doris said...

Carolyn wrote:

Hi i so want to tell u my story about my family and the aspires that dominates my husbands side of the family. I am married to an diagNosed aspie and havd four children one of them diagnosed with aspergers. My son is fine, is happy and white easy to deal with but mum husband is aggressive, quirky, cold and has real connection with the children or I. He has all the sound issues, cant read facial expressions and is always starting s fight with someone. He is 6 ft 4 and intimidating if things don't go his way. He has stopped contact for me with my family members but i have since been big enough to stand to him and do things with the kids on my own. HE loves routine and is always very nice after a melting in which he is verbally and physically aggressive. I have tried to get away from him but haging four kids is hard at the best of time. The kids are always so happy when he is not there but a certain fears kicks in when he arrives home and we don't know what mood he is in. I have a sick feeling every time his car arrives home. I think aspergers is entrenched right through his side of the family. They are all odd and inappropriate and there is constant fighting and an inability to get along with people. My husband is regimen to the point he can't stand if any part of his study has been moved. I am looking at getting out i fear if he is left for any period of time to look after the kids as he is not capable of feeding and looking after them .living with an asperger father for me andlookingy family has been he'll for twenty years and i look forward to the day i leave and don't have to look over my shoulder anymore. My children have beenraised by me alone as he has never given them any emotional love whatsoever. They purely try to placate him so he doesn't get upset. I love reading your blog and i find it has helped by me giving you my story thanks Carolyn

Doris said...

Carolyn wrote:

I understand how you feel about these relationships being exhausting. I have a husband with Asperger and its like walking on shells every day. The whole four of my kids, even the one with Asperger are always trying to placate his moods. Makes for a very unhappy home

Doris said...

Carolyn wrote:

Hi there Doris, im just wondering if you could take my last name off my blog as it is a very delicate situation. Since i found your blog i feel i would like to keep writing as i feel it helps me out. Thank you for answering me back Doris. Its nice to be able to chat about such a difficult and trying time in my life.x Carolyn


Dear Carolyn
I have had to delete your comments and re-post them under my name as I am unable to remove your last name. You may want to create a Google identity that is anonymous just so that you can freely post and comment online without having you and yours identifiable.
Dorix x

Melissa said...

Thank you for your blog, I read the whole thing! I have many experiences to share...don't know where to start, so will just say that I am happy to find this blog and love the sharing on positive ways to spin difficulties (celebrate them when they come, etc..) I use daily (try daily at least) meditation of Kriya Yoga and it is amazing...when I keep with it, the life circumstances don' affect me much, but otherwise,... well, life can be challenging and tools are sure sure handy, let's put it that way! Upon learning about Aspergers, I am amazed at how much of it is around me (many loved ones...some qualities myself, but took the test, don't have quite enough of em to have it ~ wonder if it's contagious ~ lol!)... I am in a space of, at times having great dfficulties (lack of compassion and care from loved ones..), to at other times looking at life from the aspie perspective, and also seeing that it is just a different way of being...and have been deeply looking at the great beauties in the inward life they represent ~ similar in some ways to the great Saints of India, yogis, swami's, etc.. that I greatly admire...wonder what it would be like to mix that life (of the inward God/Consciousness lovin Saint) with the aspie ~ ...

Doris said...

Dear Melissa

Thank you so much for your comment and your positive spin on things - fancy that, comparing to yogis and swais etc. My mother would have loved that!

Seriously though, I associate the gurus with having all that inward peace a well as having a different sight, or a different way of looking at things. Yet I do not associate an aspie with having inward peace - unless society leaves them alone to fit in how they like.

I'll look out for that particular type of yoga you mention as I am looking for a form of meditation I can work with. Thank you for naming it.

Take care and I look forward to more of your thoughts.

Doris x

Bill In Albuquerque said...

I am glad to have found your blog and your sharing as I am an Aspergian parent of an 11 year old and a 15 year old. I was diagnosed by a neuro phsychologist 4 years ago and have sought to be open with my own children in an attempt to alleviate some of the difficulties they experience from having an Aspergian father.

It has been my endeavor for some time to at least provide for my children validation in that they understand that difficulties in dealing with me are not as a result of a rejection or disapproval of them or a lack of love for them, rather simply a lack of ability on my part to connect with the world the way neuro typical people can.

The sharing of your feelings and experiences help me understand what kinds of feelings my children may be going through.

Thank-you

Doris said...

And thank you Bill for your comment. Your efforts and saneness shines through and I think that ultimately, whatever each of our difficulties are, it is about how we as parents operate and what we do to alleviate them.

It took me a long time to go to sleep last night thinking both about what you have said and some things that have happened this past week. If I do write that new post I'll come here and post a link.

Doris x

Anonymous me said...
This comment has been removed by the author.
Anonymous me said...
This comment has been removed by the author.
Anonymous me said...
This comment has been removed by the author.
Doris said...

Hello Anonymous

I am sorry you have removed your first comment which so helpfully outlined such classic traits that struck a chord with me, and I am sure would have done so with others.

You have asked if there is a helpline - I do not know. Have you tried just talking to your own doctor to express your concerns and to find out more about that particular drug. (By the way, there is a specialist TMJ massage which I think is far superior to any drugs and fixes the problem and doesn't just alleviate the pain. I know because coincidentally I have trained in it but do not practise it.)

Here's a bold question for you - why are you so worried about your mum being on that drug and it's side effects? She is a big girl and has made that decision herself - you are not her keeper. Our childhoods may have trained us to be attentive to the every need and whim of the parent but I figure you are no longer a young child. Do you still need to be as vigilant?

The hard reality in my life is that my mother never became the mother I wanted or needed. She may have improved a bit towards me but that was all. Then she died.

There is only so much you can do to help. Better to look at yourself and see what you can do to improve in yourself because in the end we can only change ourselves.

Sending you love, hugs and courage. xxx

Anonymous me said...
This comment has been removed by the author.
Anonymous me said...
This comment has been removed by the author.
Doris said...

Thank you Anonymous for writing again so soon.

So much you say echoes things I have written here on my blog and think. My mother always saw our lives through rose coloured glasses; was appallingly rude to people in shops; and was always the hard-done-by one in life when I was present at certain events and know it was not like that.

Big hugs to you for what you are going through right now. It is not fair and yet you are still thinking about your mum when maybe you have to take time out and think about yourself first.

Here is something to think about - you know that advice they give out on aeroplanes about putting the oxygen mask on you first before helping others - even your own kids? Well, I never understood that because of course you would help those more vulnerable than yourself..... then one day I finally realised I was of no use to anyone else in this world if I did not sort myself out first.

Would the world stop if you stopped looking after your mum first and instead sorted out your own needs? And who knows what your needs are, or may be, you do not have to justify yourself to your mother.

There have been blocks of years in my life where I disappeared and cut off all contact with my parents. Something I needed to do for me. My mother never held it against me to my face and I think became more and more grateful that I stayed around. However, do not confuse that with any genuine love and affection I used to crave from my mythical mother.

As for other bloggers who recognise they have aspie traits and are parents themselves - who knows how they do it to recognise things and to be great parents. I think there is a whole spectrum of aspieness with those being able to recognise, acknowledge and work with it to those like possibly your mother and mine was, who would never seem to acknowledge there might be anything "wrong" with them because of course it is the whole world which is wrong and they are the hard done by ones.

Concentrate on you and what you can change in you. I am sorry but nothing you can do will make your mother better or become the mother you would want. You mother might change and improve but really it is better for you to find a way to cope with her than to change her.

You know the saying a bird in the hand is worth two in bush? What do you have here and now that is worth so much more than the mythical mother you feel you need? A partner, friends, children, etc? And if you do not have anything here and now then concentrate on you finding them rather than playing the games even your mother does not realise she is playing. She lives in her own world. You need to concentrate on putting the oxygen mask on you first otherwise she will always have the upper hand in your life.

It is hard for us to cut that umbilical cord but we can and you can.....

Anonymous me said...
This comment has been removed by the author.
Doris said...

Well done you! You made that decision to walk away from a situation and you are making choices for you. You are definitely not alone but sadly, these are journeys only we can make and sometimes one can feel very alone.

Hug and love that inner child in you and take her on a wonderful journey. It is a long road..... one day you will realise things are truly better.

Please pop by to share as and when. Good, bad and in between!

Hugs to you xxx

Hopwood said...

Hello

I've just found this because I'm wondering if my parents have aspergers.

My father has some traits, my mother more so.

She's very sensistive to noise and touch. she's unable to be gentle, a hand tremour, always dropping things. She cares about me but never get it right. She scapegoats those she can't handle. Lots of my childhood was totally bizarre. She has very strong political beleifs and thinks that everyone should think the same as her. She's not capable of paid work - whouldn't be able to co-operate but loves voluntary work and sitting on committees where she can be in control. She doesn't understand jokes or plots of films unless they are political. she can only watch documetaries on TV and when I was a child we all ( including my father ) would go next door to watch TV because it was too difficult to do so when she was around. She has no sense of people's personal space, especially in the morning and expects everybody to be up and having political discussion at 7am on a holiday. She can't handle noise from lots of people or from radios or music unless it is classical and she is sitting down doing nothing else but listening to it as if she was in a concert.
She is always asking lots and lots of personal questions. She doesn't like emotions and she hates other people being emotional around her. She is very "clever" and speaks several languages and has a very good memory but at the same time doesn't understand lots of things