A good-looking family with “a problem with no name”
Judy Singer started ASpar, the online support group for the children of Autistic parents in 1999. It was a world first: the first space to recognise that Asperger’s children do grow up, and some become parents. This may now seem obvious, but in 1999, the focus was all on children, and the next step hadn’t occurred to anyone. Let alone that some of the characteristics of AS might be problematic for their children.
As a child, Judy had sought the world over, in literature, in film, and even in psychiatry textbooks, for words to explain her mother’s odd behaviour. Finding nothing, she gave up, and assumed her mother, Agnes, had simply made a choice to be self-centred, invasive, lazy and helpless! But when Judy had a child of her own who began to show similar behaviours to her mother, the penny dropped. It was something hereditary!
Since discovering AS, she now has the words she sought: unable to recognise social cues, obsessive, compulsive, perseverative, anxious, short-fused,
Judy’s next thought was: “If this is a common disability, then I can’t be alone! But how to find others like me?”. As a sociology student, she had the academic tools to research the subject thoroughly. But she found absolutely nothing anywhere in the world. Then along came the internet, and Judy realised this was the opportunity to reach out that she had been waiting for. And within a few days of her setting up the ASpar website, the very first prospective member showed up! From then on it seemed like a whole new world of relief and amazement opened up for every new person who joined, the common theme being “At last, I am not alone!”
For Judy and Agnes, this was a healing journey, thanks to the support of ASpar members who understood at last, and the rivers of tears that so many of us let go forever.
There is a happy ending – Judy now understands what Agnes had to contend with as a disabled woman who the world simply did not understand. She respects her mother’s struggles and recognises that at heart Agnes had always been a loving, wholly innocent, trusting human being who could not comprehend her effect on the people around her, or their rejections.
But just as important as understanding is practical support, pharmaceutical advances and publicly funded social services. Having been evicted from her home because of her hoarding, Agnes now lives in a wonderful retirement village. With SSRIs managing her anxiety and depression, and getting the level of personal care and domestic help that she has always needed, she has gone from being someone constantly shunned and rejected, to the most beloved resident! Thus some of the traits of AS – a lack of herd behaviour, ie cultural bias, prejudice, or malice, a lack of interest in gossip, a love of music and ideas, and a childlike openness have come into their own at last. And the fact that retirement homes are places where eccentricity is the norm.
Judy still believes the necessary level of personal care is something no child should ever have to provide for a parent.
She remains sceptical about the value of interventions by
“professional” social welfare agencies in the family home
Caught by a street photographer in a moment of tension
Growing up with Autistic Parents 
I wish there was a way to connect with others who are children of autistics such as a private forum or place on FB. I feel like no one understands my struggles of dealing with an elderly autistic parent or how my lack of appropriate parenting hurt me as I had to find my own way into adulthood having not been taught a lot of things I needed to get on in life including socialization as a child. I always felt as a child I was having to raise myself and this has affected me as an adult.
I’m so sad! Why no new members? I’ll pitch in anf help monitor comments or anything you need. I’ll leave my email. Please don’t stop conveying this imminent message to people. Normal people are being diagnosed with all sorts of disorders when it is burnout from being a parentified child of an asperger case.
My mother’s is a lunatic and I am so grateful for this site. When I was three at times due to her autistic rages I thought she was possessed. Then when she rocked back and forth and sucked her thumb I thought she was “retarded” as we said in the late 80s.
And I still don’t think she has a soul.
Please help me find othersvwho dealt with mad asperger mother’s please.
Tatiana
I hope that this can be opened to new members.
I am part of a similar group for AS Partners, AS Partners Australia, it has a closed discussion area, only open to members. It has been a huge help to me, to be able to cope with my partner and better understand myself and what I am going through/have been through.
I’ve now realised that I have been going through this my whole life, and I was overjoyed to find this group, a place where I can do the same for the problems I have with my parents.
Growing up with an Asperger parent is absolutely hell and ruined my life.
YES, Oh YES. But I thought that I had a normal childhood. I Thought that it was all my fault. I thought that everyone’s mother treated them like that. Until a few years ago.
This site blows my mind. I have only relatively recently realised that my father may have Aspergers and I am desperately searching for anything that may help me confirm this, even if it is only in my own mind.
Although some things don’t tally, the list that Judy Singer gives above could actually be a description of my father – peseverative, anxious, monologuing, obsessive, compulsive, unable to recognise social cues. I have sat on the phone to him for an hour before now without speaking once, beyond the occasional grunt, as he talks in stream-of-consciousness fashion about one or other of his only two subjects of conversation, for instance.
For years, he has tried to convince me that I am crazy, continually accusing me of making up the instances of his awful emotionless behaviour when I raise them with him, for example. The word “peserverative” is another revelation – there is actually a word to describe the way my father repeats stories over and over and over and over again, completely ignoring my interjections of, “I know, Dad, you’ve told me this before!” Just the fact that there might be an explanation is such a relief that I am struggling not to cry as I type that.
I am absolutely gutted to discover that it is no longer active.
I felt the same way when I discovered this site is no longer accepting members. I have searched for years for some sort of support for children of AS parents. Is there any other site? I’ve always felt like any place I expressed the difficulties of my childhood I was instead accused of being insensitive to my parents disabilities. But since when should children be left to raise themselves and parent their own parents from time they are a toddler?
Originally I was diagnosed with Aspergers myself by my medical doctor who had a son with it. She noticed how I was awkward like him. I’ve since had psychologists who agreed with her observation and others who didn’t. Since I was close to this doctor I believed what I was told totally embarrassing the diagnosis, joining adult AS groups then discovering I was nothing like them and finding they were irritating as all get out just like my parents were. I do have empathy and know how to behave, but I think I am socially awkward not because I am on the spectrum but because I was not socialized as a child. Neither of my parents had friends or spent time around others. I was lectured not to make friends in school and punished by my mother when she discovered I had been talking to other kids while at school. At home I was ordered to stay in my room and out of the way because I was just making too much work for her. I never understood why I was such a hassle as I was always quiet as a mouse, too terrified to utter a word lest I be yelled at and berated for hours or hit. I had bleeding ulcers in elementary school I was so stressed out from the constant criticism.
I guess I should feel lucky I was fed unlike others here, but I did go many hours without food because we were only allowed to eat at specific prearranged times and that was hard for a small child. Honestly when I discovered children today are given snacks in between meals and when on the road I felt jealous why did I have to go hungry so much? My mom was bizarre where she would take pleasure and grin whenever I was in pain and would do painful things to me sexually all the while grinning and laughing. She would accuse me of making her hair turn wavy when I would buy a pack of this bubblegum called Tidal Wave. She punished me physically because she didn’t like the way my adolescent body was developing. I never once had a birthday party or went to a friends, never visited a friend’s house, had sleepovers with the exception of a few times with one of my cousins.
I had a head injury when I was 9 months old which I found out as an adult caused a deviated septum and is why I’ve had such trouble breathing my whole life. I was never taken to doctor when ill and have hearing loss from years of untreated ear infections. My mother was so ignorant as to how to raise a child that she put instant mash potato flakes and meat gravy in my bottle from time I was 3 weeks old to keep me from needing to be fed so often. As an adult I have 30 different food allergies, digestive problems and several medical problems which I can’t help but think is related to my lack of being cared for properly.
These days my mother at 72 acts like a child and requires everything be done for her including having her brothers and mother call to make doctor appointments for her, balance her checkbook and all sorts of things other adults can do for themselves. When I was a child she always claimed others were out to get her, though I could never figure out who they were. She would also race through the house doing OCD things like having to screw and unscrew light bulbs out of the light fixture a certain number of times before everything was “safe”. She would sit in her room for hours in her underwear laughing at the wall, yet claim to the outside world that her only child worked her to death having to take care of her. Yet I would be left alone at the age of 3 and learned to cook for myself then.
My dad was in his own little world then and now too. He has only a few interests and I would be yelled at if I did not express the same interests in his obsessions as he had. He expected me as his young daughter to have the same obsession with military aircraft as him. After I became and adult and moved in with him after they divorced while I was going to college he would yell at me any time anyone called for me on the phone as I was “not allowed” to have any friends outside of him. I did manage to get involved in karate classes and I would talk about something amazing one of the instructors had done like breaking concrete blocks and he would immediately be angered and retort that martial artists were not as strong as Air Force jet fighter pilots and would be angered rest of day because of this. He did belong to Air Force but was only a mechanic. Later he would lecture me for not having gotten married yet at same time he did not want me to speak to others besides him aside from a select group of elderly neighbors and friends of his that he approved of me being friendly with. How was I suppose to marry if I was not allowed to date or even speak to anyone? He also could not comprehend how to treat a young adult daughter and would physically drag me into his lap saying I had better sit in his lap like a good daughter should then he would start grabbing at my crotch. He never did this to me as child, only after I turned 19. His girlfriend at the time was able to finally break him of that bizarre habit though he was bewildered why it could possibly be wrong. A few years later when he was put on Prozac he started grabbing at my butt pinching it and putting his hands down back of my pants. When I would pull away he would yell how “frigid” I was.
As embarrassing as it is to say I was so socially awkward and low esteemed from my upbringing I was not able to secure a good paying job and move out so I became like his housewife having to do all the housework and cooking for him because as a man it was beneath him to do womanly things like cooking and laundry. He had no close friends as in the type to go do things with, only acquaintances he spoke to in neighborhood, so whenever he wanted to go out to eat or go to the mountains I was ordered to drop everything and go with him despite having college homework to do. I should state he selected the field of study I was “allowed” to get a degree in poo pooing my idea of working in computers instead for this new environmental science degree he had heard of which I was never able to find a job in. At age 28 I met someone secretly from online and literally ran away from home like I was still a teenager because I knew he would stop me if I did not sneak out. I moved almost 2,000 miles away knowing I had to put great distance between us to prevent him from coming after me. He did even contact the police to try to get them to come apprehend me which of course they could not do to an adult woman because she moved out of her dad’s house.
Fifteen years later the loads of medical problems I’ve had caught up with me, I got laid off and couldn’t pass the physical to get reemployed elsewhere so basically I was forced into taking disability to survive since I am still unmarried. I ended up having no choice but to move back close to dad because its cheaper cost of living there and he helps me financially. He immediately went back to telling me in my 40’s that I am “not allowed” to drive to neighboring towns, nor make other friends and tried to force me back into going to dinner with him as if we were dating. In order to meet people my own age I enrolled in some classes and have attended some out of state cultural events each time having to covertly sneak away and not let him or his wife know what I am up to since I am not “allowed” according to both of them to leave the county. Now I feel totally defeated back in the grasp of both AS parents as they start to show signs now of Alzheimers and are demanding childishly I spend all my time with them because they are lonely. I go to visit Dad only to anger him by speaking of some interest that is outside his obsession or speaking of how I feel which angers him when anyone has feelings or emotions because he sees emotions as a sign of weakness. I also discovered during my years of absence they he had located a young neighborhood girl to start pawing at like he did me and I witnessed him putting his hands all over heard and hugging and kissing on her head. For some reason I couldn’t speak up to him and tell him to stop it was inappropriate. I just drove off and wondered if he would eventually get in trouble with law for what amounts to sexual assault. Then I didn’t see the little girl for several months and on a whim asked him how she was and he grumbled oh she was just getting moody and unfriendly and didn’t want to be with him since she was turning into a teenager. I just shook my head that he is just unable to fathom what appropriate behavior is. His current wife has been able to teach him a few modes of behavior and he is not as bad as he was. He has never known how to express interest in others, well outside of grabbing their bodies, till oddly after his mother died and ever since he has completely taken on her persona. It is totally bizarre but he now speaks the same way she did, has the same gestures and says the same rehearsed greetings as she used to say whenever I arrive and depart his house and in emails. It gets quite boring everything is rehearsed. I don’t recall if he had repetitive behaviors before, but now that I moved back he drives me batty with his constant rubbing his finger back and forth, faking yawning which I counted as 48 times within 2 hour period once and his repeated patting the back of his head, and hitting his belly with his hands as if he was playing a drum tune. With all this I can’t help but think both my parents are somewhere on the spectrum and now they are getting very forgetful as if they are getting Alzheimers on top of that. Meanwhile I am left wondering if I am on the spectrum or if I am NT but just never learned proper socialization skills because of my parents inabilities. What is even more frustrating and bewildering is I seem to attract Aspergers people having ended up unwittingly in relationships with one and then have had several AS strangers stalk me when I refused to show interest in them. My life experiences have left me feeling very awkward, lonely and confused despite going through several years of counseling. I also have severe complex PTSD now from the years of abuse and as my counselor said childhood neglect as I honestly didn’t realize other kids had it much better than me growing up since my parents would insist how they were ideal parents. Thanks to anyone who read my long rant. I just had to share my horrible life experience to show how AS parents harm their children.