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
Feeling Invisible in the Asperger World
The Neurotypical Site
Welcome to The Neurotypical Website
Parents with Asperger Syndrome
Parents with Aspergers
What is Asperger's Syndrome?
There's something different about dad
Links for family members of people with Aspergers
Visit Jody's website at http://www.ncubator.ca and http://ncubator.ca/blogger
Reviewed October 23, 2015
by Michele Blacksberg RN
Add a Comment66 Comments
Thank you for writing. You've really been through it. And even though you are grown and hopefully are able to stay away from the people who hurt you the damage doesn't just disappear, does it.
Once the truth appears, and you realize that is wasn't some fatal flaw in you but came from outside of you, relief may come and some light may dawn. But the question can linger -- I've grown up all wrong, how can I change things?
I think it is a long process, and it helps to be able to get hold of information and to have people to talk to.
But even when that may not be so available, the light you have seen will stay with you and if you are patient and kind to yourself, you may find that change -- in how you think, in what you do, in the types of people you open yourself to and the things you will now avoid -- will come. New opportunities can be handled in new ways. The past doesn't have to be your future.
Good luck to you:)October 25, 2018 - 6:44am
As my mother slips in to vascular dementia and Alzheimers she has become a sweet little old lady. Her self centred to the point of being greedy trait is now acceptable and she forgets to keep what was the life force of her relationship with my father going - the constant bickering.
Now that her personality is occluded by her conditions, I am reflecting on that personality - I suppose people with NT parents would call it being sad that the parent they knew is receding. I am wondering how my mother's life would have been improved if he had had a diagnosis, if she had known that she had Aspergers ( I am adopting the immensely arrogant position of the diagnoser here, I know). Probably not, although she would have found it a relief not to have put so much energy in to pretending she understood people's emotions.
But, and this is why I 'm offloading here, it would have been useful for me as a child. I could never understand why every single interaction, was very likely to end with someone getting anxious, upset or angry, with a row or a hurt feeling or a feeling of guilt, then fifteen minutes later everything was perfectly all right and would we like a nice cup of tea? (we are English).
I could not understand why the same patterns happened, even during my visits as a young adult and a mother with my own children - the same pattern, and the constant background bickering over minute details and perceived slights and unfairness between my parents.
My mother did love me, and she did show affection, however, she wasn't really interested in the details of quality of my life, just a long as she could summarise by saying "Oh that's marvellous, Darling". She used to say very hurtful things and would never stop talking, she always had the last word and was absolutely delighted if she could be right and demonstrate her cleverness and would poke at the embers of a row or an upset without having learned that it was time to stop sharing the contents of her head.
I suspected she may be Aspergers when I told her about my miscarriage in a phone call. She told me that she knew about my miscarriage because she had dreamed that she was visiting a museum and she noticed a baby hanging on a fascia board ( you know what a fascia board is, don't you Darling?) and as she had walked past it had let go its grip and slid to the floor. "So you see, I knew about the miscarriage".
At that point I figured that either my mother was a monster or that she had no idea what she was doing and how she made people fee. That was 18 years ago. I emigrated to Australia with my husband and kids and never looked back.
My sister copes much better with her because she has been a psychiatric nurse for 35 years.
Anyway, thank you for the links, and the therapy session. It is so useful to know we are not the reason we feel these varying levels of neglect from our Asperger parents.March 17, 2018 - 7:26pm
You said you were "adopting the immensely arrogant position of the diagnoser" and I just wanted to say something about that.
Whether or not she was ever diagnosed, whether or not a professional would agree with your diagnosis ... whether she could be "proven" to have Aspergers or not -- you know what you know from years of a relationship with your mother.
Does she have it or does she not? You know that she has the traits that are markers for Aspergers and you know how that has made you feel all your life. You know that it has left marks on you, your expectations, you self-image, your relationships. And I don't think you are "arrogant" or presumptuous at all in calling it like you see it.
You are now enabled to see life in a different light, and be relieved of guilt for things you were not guilty of. It is OK to realize and to say aloud that it was not you that created this situation, but that you have the right and the ability to create something new and different for yourself.
I wish you all the best:)March 20, 2018 - 7:17am
Those of you who have gone through counseling/therapy with some success, how did you find your therapist? Did they have experience with our situation? I'm realizing I need to start therapy for this, but I don't know how to find a therapist who will understand.February 12, 2018 - 1:08pm
My Mom, two brothers, son, niece and nephew have Asperger's. I suspect my maternal uncle and grandfather also had the condition. My Mom's world has always centered around her. She lacks empathy and quickly slips into a rage becoming verbally and physically abusive if she misinterprets other people's words. My Dad and I tried not to 'trigger' her by doing her bidding, but for me, it was like living in a prisoner of war camp where you never knew when the 20 ton weight would be dropped on you so my bedroom was my sanctuary. As a small child, I had a hairbrush broken over my head because I made a whimpering noise when she tried to get a tangle out of my hair. I had my shoulder dislocated when I was small too. As I grew older, I thrown across rooms by my hair so that my hair came out and furniture was toppled. I received 60 to 70 slash cuts across my back and legs from a flyswatter when I was sixteen. I did the laundry and most meals with my father and I cared for my younger brothers and cleaned the home. She told me as an adult she has no recollection of ever having beaten me and said that she has always felt in competition with me. Even now she has physically attacked me when I have tried to help her. I hated her throughout my time at home and the first decade after I escaped from my home. My father endured public humiliation, verbal abuse, and some physical too. My younger brothers, have been more fortunate than I as she can relate to them better. My grandfather used to beat my uncles and sometimes my grandmother. I don't hate my Mom now that I realize she has Asperger's, but I do recognize that I am permanently scarred by my experiences and have been on anti-depressants and anti-anxiety medications for some time. I don't believe that people should have children if they have Asperger's.January 5, 2018 - 2:41am
You have really been through an extreme amount of suffering! You were raised with the unspoken -- and perhaps also spoken -- message that how you felt and what you went through didn't matter, but now you see that this isn't true.
I hope that you are able to live in a way that you will be able to protect yourself from abusers and seek out people who are very different from what you have known -- People who are compassionate and sensitive to others, who will respect you and treat you with kindness.
They are out there, and you can find them. I wish you well.
JodyJanuary 9, 2018 - 7:23am
It's been a long road since I learned that my mother is on the spectrum. I am a neurotypical, but my sibling also has a disability. I have entered the special education field with compassion and patience, but also still have bouts of depression from my upbringing from time to time. I'm always trying to move forward and not look back, though there's no denying it has shaped who I am. If anyone ever has any questions feel free to email me.December 21, 2017 - 10:25am
It's brand new to me to think my mother might have had Asberger's. Some things fit, and some I'm not so sure about.
I also have CFIDS/ME.
AnneJanuary 4, 2018 - 8:52am
Good for you! Helping others as you continue with your own healing and personal growth. Be kind to yourself as well.
JodyDecember 22, 2017 - 8:37am
I am an NT child whose father was diagnosed with Aspergers many, many years ago, and who then kept it a secret from us all until his dementia meant that my stepmother had to manage his medical situation - and was given access to his medical files. For me it was a huge shock, and a huge relief, to hear the diagnosis (in my 50s). Suddenly I realised, and genuinely understood, that 'it' wasn't my fault. All the times I'd failed him, hadn't lived up to his expectations, hadn't lived my life according to his rules, had listened to music he disapproved of, had married a man he didn't approve of (twice), had got a degree in a subject he thought a waste of time, and many many more things, triggered reactions that were actually NOT ABOUT ME!
Suddenly I understood SO much about my childhood and interactions with him up to that point. He was a satisfactory parent insofar as he gave me boundaries, held down a job to pay for a roof over my head, food, clothes etc. He gave me the opportunity to get a good education. However, he never loved me (and he told me so), he never thought I was a worthwhile human being. He never hugged me, ortold me I'd done something well (he often told me I'd done something less than well). He hasn't spoken to me for many years now, and I live on the other side of the world. I support my long-suffering step-mother who has the unenviable task of looking after him, and one day I'll go home for his funeral - for her sake. Eventually, after much counselling, I found peace for myself and, with the knowledge of his diagnosis, I have understanding. However, I would never wish a man like my father on anyone. It has been a long and miserable journey.December 11, 2017 - 5:39pm