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NT Children of Parents with Aspergers: Looking for Information?

By HERWriter
 
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NT Children of Parents with Aspergers: Some Information for You LoloStock/Fotolia

Six years ago, I wrote an article for neurotypical children of parents with Asperger's syndrome. I wrote that some NT offspring of AS parents have grown up feeling unloved, that their parents were not able to tune in to their needs and their feelings.

As children, they blamed themselves for a disconnect between them and their parents. Often as adults they have continued to suffer from the lack they experienced in childhood.

The response from neurotypical kids to that article "Asperger's Parents and Neurotypical Children"was substantial, and still ongoing, six years later. So much so that I am writing on the subject again.

I received 154 comments and replies. Some were posted as recently as last month. Some readers used the Comments thread at the end of the article for a time as though it were a forum where they could talk to each other about their experiences.

When I started researching for today's article as a follow-up to my first one six years ago, my online research was interesting. That is to say, disappointing. Again.

Material about these NT children was surprisingly sparse six years ago. It's still challenging to find anything written from their perspective, or about their experience.

One differences I noticed was that my original article from 2009 was showing up as the first item in my Google search. And in second place came an Aspergers forum page that ripped my first article and my intentions apart.

Some comments by people with Asperger's syndrome responding to my first article were in much the same vein.They told me that I was attacking them all, which was not true.

They said that lots of Aspies were good parents, that they themselves were good parents. That plenty of NT people are bad parents, too. All of that is undeniably true.

But really, that's not my focus. This has happened too many times to these kids.

So often, they find their feelings and their needs pushed aside. Any suggestion that this happens is met with a reaction that is all about the parent with Asperger's syndrome and not about the child at all. If I needed to see proof that there is a problem, the comment column for that article was more than enough.

It is not my intention to condemn or attack people with Asperger's syndrome. I am not trying to say that every AS parent has done damage to their children. My focus in this article is on the children who tell me that they grew up lonely, that they grew up feeling rejected, worthless and unlovable.

Most comments responding to my first article came from NTs who grew up with AS parents. The parents' personalities were not in question, nor their intentions, nor their goodness. The offspring were taking this opportunity, which was meant to be all about them, to talk about their lives, to ask questions, and vent their thoughts and feelings.

The cry that I heard over and over again was, thank you for remembering us. Thank you for telling me I'm not alone.

Thank you for telling me I am not the cause this depression, loneliness, sorrow, grief. Thank you for helping me to understand where all that pain has come from.

Thank you for suggesting I can hope for something better, because it wasn't me after all. Thank you for saying it's OK for me to open my mouth and speak, and expect to be heard, to be visible to other people.

It's OK to expect, to require, something for myself in my relationships. It's OK for me to hold out for being an equal participant, and equally on the receiving end. Thanks for the reassurance that wanting such things is not selfish, it's just human, and part of any healthy relationship.

Many NTs mentioned that they can find next to nothing online for them. I suggested in a post that maybe they can write something themselves. They can post comments on my articles, or other writer's articles. They can start blogs. They can start forums. They can post on Facebook or other social media.

The feeling of invisibility and of having no voice, the fear of rocking the boat or of being called selfish for talking about yourself and how you feel may be deeply ingrained. It may be your first and biggest obstacle. But if you can climb over that one, and continue to climb over it, you may find it was your only real obstacle.

I spent several hours looking for resources for NT children of AS parents and I didn't find much. But I was able to accumulate some articles, book recommendations, websites, forums and a few writers and professionals who have reputations of being helpful to NTs.

In no particular order, here are some webpages that may be beneficial:

Asperger's Parents and Neurotypical Children
https://www.empowher.com/aspergers-syndrome/content/aspergers-parents-an...

Feeling Invisible in the Asperger World
http://psychcentral.com/lib/feeling-invisible-in-the-asperger-world

The Neurotypical Site
http://www.theneurotypical.com/index.html

Welcome to The Neurotypical Website
http://www.theneurotypical.com/about_us.html

Parents with Asperger Syndrome
http://www.theneurotypical.com/parents-with-aspergers.html

Parents with Aspergers
http://doris-mash.blogspot.ca/2008/02/parents-with-aspergers.html

What is Asperger's Syndrome?
http://faaas.org

There's something different about dad
http://www.independent.ie/life/family/mothers-babies/theres-something-di...

Links for family members of people with Aspergers
http://www.tonyattwood.com.au/index.php/component/weblinks/category/292-...

Visit Jody's website at http://www.ncubator.ca and http://ncubator.ca/blogger

Reviewed October 23, 2015
by Michele Blacksberg RN

Add a Comment63 Comments

HERWriter (reply to Anonymous)

Hi Anonymous,

 Mind-blowing for sure! I think you need to decide for yourself whether you want to talk about it with your parents. The likelihood of getting any acknowledgement at this point may be little to none. 

But you are free to explore what this means for you in your own life and you may find that your "script" for your life is now changing. Looking back on your past may look very different, and you may find that your expectations for the future have scope for great change as well.

Diagnoses for your husband and daughter leaves you well-equiped in that arena of your life. Things may improve for all three of you. I suspect you've already had many questions answered that have been unanswered for a very long time.

The fact that you married a man with AS suggests that you may have grown up with it and many NTs with Aspie parents will find themselves in a similar situation. We gravitate to what we know.

The fact that your daughter was diagnosed with it suggests a possible genetic connection, and the idea that your dad could be part of that genetically is not unfeasible. 

Sounds like you are actually in a very good place, though it may be hard to catch your balance.

Good luck to you.

Jody

July 10, 2016 - 2:16pm
EmpowHER Guest
Anonymous

The neurotypical have a real problem understanding people who don't think like they do. Autism spaces are full of mothers wanting their kids fixed, railing about what broke their children; was it vaccines?

This means that the idea that you can find a mental health professional who will understand the experience of growing up with (in my case) two Asperger's parents is severely problematic. Clinicians by in large work to offer coping skills by taking you back to a time before trauma, a time when you had security, stability and affirmation in your life.

For children with AS parents, that time just doesn't exist. Harlow's classic wire monkey vs cloth monkey mother experiment illustrates how having a non-emotional and non-physical parent causes a lifetime of trouble. Our experience of apparently narcissistic and distressed behaviour is not just a bit of maladaptive behaviour to be addressed, it is the deepest.

I spent my life as the target patient for a family with two Aspergers parents, meaning I not only was the scapegoat, the target for pain, but was also the one who developed mature coping strategies. I did the therapy for the family and I took care of them for the last decade, translating the world with hard won skills and massive amounts of self-denial.

The emotional costs of my life, though, continue to pound at me, no matter how much therapy I do. The body keeps the score, as Dr. Bessel Van Der Kolk notes, and without effective mirroring, people who can understand and reflect the experience rather than finding it incomprehensible, finding ways to develop the trust that never was supported in early development is impossible.

I assure you that no matter how much I talk about my experience, without those who can listen to and understand my experience, it continues to be a massive obstacle.

June 4, 2016 - 7:57am
EmpowHER Guest
Anonymous (reply to Anonymous)

I do understand! I feel that too and it especially ticks me off when my therapists expects it to be ALL on me because my ex has AS too... Yes, I not only was raised by one, I accidentally ended up being in a relationship with one. At any rate my therapist has this unspokent " woe is he" for the AS ex, and I'm sitting there thinking OMG is there anywhere any therpaist that is going to be there for ME!!! Geez!! It's like ( this way worse in my childhood) I'm like you were the therapists to the family, to him to even my therapists when she gets into " he can't help it, he has AS" and I'm sitting there in pain. I have found some CBT to work, and I'm getting out of the loop that was caused by my childhood. I totally relate to what your saying. I'm still struggling at my age in some areas. I cannot go back to a time, there isn't one!!! Living in the present moment has really helped me feel much happier and alive. When I do that, I don't have a script running. Thanks for sharing!

August 15, 2016 - 7:51am
HERWriter (reply to Anonymous)

Hi

It sounds like you have done an enormous amount of work, and made some headway on this difficult journey. I know there is further for you to go, but you have begun and you now have some idea what you are looking for and what you want to jettison.

There are some facebook pages that you can look into -- and for some reason this thread has also turned into a place to connect with others who understand. By all means, use it to the hilt.:)

Jody

June 7, 2016 - 6:27am
EmpowHER Guest
Anonymous (reply to Anonymous)

Dear Anonymous,
It's C here from the previous comment. I hear you. Every single word.

So what to do? I still have a lot of problems but I am VASTLY happier (and more functional) than I was - if you asked me to put a number on it I'd say 70%. I'm 48 next week and still developing. I'm going to share some of my processes here and while everyone is different I hope this helps one or two people.

Firstly I found the same with talking therapies - that talking doesn't get very far. I started therapy as soon as I left home but realised quickly that while it helped me see the present a little more clearly it was doing nothing to change the way I felt about myself, interacted with others and saw the world. I was (and probably still am) a bit of an odd ball. I drank heavily, was dangerously promiscuous and would self harm in public. Shudder.

My lucky break was that I'm a dancer (though I started out with a Fine Art degree) and ended up training in Amsterdam where the education was very holistic. As well as our technique classes we had 'exploration classes' that were based in Body Mind Centering - a form developed by Bonnie Bainbridge Cohen. In the afternoons we had different workshops and the first five weeks was Authentic Movement - a form that was originally developed as a therapy for people who's trauma was pre-verbal. It's been taken up by the dance world as a choreographic tool but fundamentally all that happens is that a group moves (blindfolded and with witnesses for safety and validation) exactly as the body wishes - sessions were three hours long giving space for some deep seated stuff to emerge. We all screamed, laughed, sobbed and slept at different points in this process.

And that's just one example. So I had three years of that in Amsterdam, then moved back home and had a career that lasts to this day (I move a bit slower now but a few folk still employ me!) meaning years of being in my body and often being asked to touch those unconscious places to create emotionally resonant movement for the stage.

I wasn't initially aware at the time how much good this was doing in terms of my childhood problems, but 15 years ago I started training as a Shiatsu practitioner with an extraordinary man who was all about being present with emotion in the body. Now the connection between healing and bodywork was more overt.

At about the same time I started a meditation practice (again I lucked out with my teachers) and I feel this is where it has all come together. The type of practice I use seems to give space for some brain rewiring to take place.

Looking back at my life now I can see that everything was leading towards recovery - even though it wasn't always clear to me at the time. In 2000 at a New Year's Eve party I felt for the first time that the positive outweighed the negative in my life and that there was a point to being alive other than simply surviving.

I have been incredibly lucky, and have had the time for all this. It's been, and still is, a huge amount of work. I spend one to three months each year in solitary retreat to really give my meditation practice time to do its thing and not everyone is going to be able to do this.

But maybe I can help? I say this tentatively as I can see now how 'off' I was when younger so I'm probably still a bit off now - but I seem to help the people who come to me for Shiatsu. I feel quite excited about the idea, though, which is a sign I've come to trust that I might be on to something.

I've recently joined a facebook group called NT Children of AS parents. One post addressed the problem of finding a therapist able to work with this. She suggested finding someone who specialised in child development who could help us unravel what stages got missed out on (causing actual and literal deficiencies in the structure and connectivity of our brains) and to fill in those gaps. I'm looking for one for myself as even though I feel a lot of that has already happened for me I've probably still got some big fat blind spots I need someone else to point out.

One thing I feel very clear about at the moment is that the root of my problems is not a culmination of this bit of neglect here or that bit of unintended cruelty there. It is that when as an infant I looked into my mother's eyes she could not see me as a whole person independent of herself. Human beings are not just born, they are made by social interaction - and it is such a basic and early part of one's development to be seen as a person (which under normal circumstances simply happens) that it's rarely addressed. Sort of like fish not noticing they are in water, those with NT parents don't even see the huge gift of 'self' they were given in the very first phase of their lives.

Maybe I should start a blog somewhere? I already have a title for it in my head. I'd love to help other people - even if it's simply to say that I understand the level of suffering. Looking back at how I used to feel I can't believe I carried on living. We are so strong, and the brain and body can keep developing. Please know that there is hope.

Love to all,
C.

June 5, 2016 - 12:38am
EmpowHER Guest
Anonymous (reply to Anonymous)

Start the blog! And give us the link.

August 10, 2016 - 3:37am
EmpowHER Guest
Anonymous (reply to Anonymous)

It's wonderful to hear that - thank you! I'll see if I can get my s**t together on this. At the moment I'm feeling very chaotic. This new understanding has been liberating but/and has also given me access to an even deeper level of pain. It does feel as though I'm right down to the bottom of the barrel, though.

I've always had these 'horror movie' moments either during the day or waking me from sleep - the sort of stomach dropping, heart thump you get when the monster suddenly appears - and for years I've been expecting to uncover some particular moment of sexual (for example)abuse to explain it. Now I know it's simply the horrific (for an infant) belief that I was unlovable and that no one could take care of me. To an infant that is fear of death, the ultimate fear and sadness. Whilst it's excruciating to take on board that this was my actual and unremitting experience I feel clearer and less tangled than I have ever done in my life.

Fortunately I know how to work with this pain and I have great trust in the innate intelligence of biological life to get me through this - but right now (I'm in my nightie as I type this at 17.32) I'm not at my most functional!

August 16, 2016 - 9:40am
HERWriter (reply to Anonymous)

Yes!:) If C. starts a blog, they should definitely post a link to it on here.:) And send it to me in a private message as well.:)

Jody

August 10, 2016 - 7:25am
HERWriter (reply to Anonymous)

Great stuff here, C.

You have really been persevering over these many years.

You could definitely start a blog if you've a mind to. Or a facebook page -- or both. You could post the addresses for anything like that in this thread. I don't think they would be removed. 

You folks could also get in touch with each other, I would think more privately and have conversations as in depth as you wish with each other, form connections, share your desire to be free from this highly specific type of isolation.

I am very happy to see the conversations, the speaking from the heart, and the responsiveness that I have been seeing in this thread.

Jody

June 7, 2016 - 6:35am
EmpowHER Guest
Anonymous

Dear Jody,
I am crying as I write this - tears of relief! I knew from an early age that there was something very wrong at home and I left early. In many ways my life since then has been blessed in that I had an amazing education in the arts that led to a career that is still expanding. My search for healing has led me down all sorts of fascinating and unusual paths and while I can honestly say that I can't imagine how I survived the terror and unhappiness (there needs to be a stronger word to describe what I felt but I can't think of one) of my childhood I also regret nothing. Any changes to my past would mean that my present would be different to what it is and that's not a risk I'm prepared to take.

That said I suffered from crushing depressions for years and I still have many problems.

I've been saying for some time (not to them!) that I think my parents and brother are 'differently wired' but even though I knew I was telling the truth I felt like I was lying. BUT!!!!! Now I have read other people's stories I feel utterly different! It's like everything has come into focus, or I've been let out of prison. Thank you Thank you Thankyou for providing this platform and to everyone who has posted on it and the much larger volume of comments on the previous article. I have read them all and feel transformed, clear, supported and validated.

Another thing that has touched be hugely has been your (Jody's) firm but gentle comments when a very few commentators wish to stop the NT children sharing their experiences. It feels like someone has stepped into the room when as a child I was being stripped to the bone and said 'this is not fair, please stop'. The hurt child in me appreciates your intervention very much!

I have asked to join a couple of facebook groups - and hope they get back to me. There really is shockingly little out there about this issue.

Thank you again to everyone (and I mean EVERYONE) who has posted here.

With love,

C.

May 31, 2016 - 7:24am
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

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