Memory loss in autism - are we alone?
Take a look at that drawing above . . . Matt drew this to express his hurt and frustration at the disappearance of his memories..... he was 16 years old and could no longer remember his childhood.... only 16.
There’s so much variance in autism that sometimes it’s difficult to connect with others having similar problems. Some autistic individuals have food allergies and gut problems, some have seizures, and some autistic people have more than one disorder piled onto their autism. The possible problems that can accompany autism seem infinite, and yet with all the variances on the spectrum I have not come across any mention of memory loss. I have been searching for information on memory loss in autism for quite some time, but alas, I have been unsuccessful in my quest. It occured to me that Matt may be alone in this aspect of his autism. Is he?
Many autistics have a great memory. Matt has always had a wonderful ability to retain scientific facts and thousands of snippets from history. He can learn how to do something very quickly by recalling directions almost word for word. He has had this gift as long as I can remember. Unfortunately, his memory for people, places and events of his childhood are gone – completely gone. He has no memory of being a young child and cannot recall an instance of his life prior to the age of 10. Is this because Matt, my son, is moderate / severe on the autism spectrum? It’s not easy finding others with the same degree of autism to ask. Most autistic people I come across on my search are those on the milder side. They are articulate, in both speech and in their writing. None have ever mentioned memory loss – not one. I assume that if I actually met someone more like Matt, someone very autistic, that they would have greater difficulty in their ability to converse or write or possibly even understand my question, but I would at least attempt to ask it. I know I could be wrong, but I may never get the chance as the more severe cases are still quite rare. If this is the case, that moderate to severe autistic individuals can suffer memory loss of their childhood, then I feel it’s something I need to put out there if only to make more people aware that there is even a problem in this area.
It began when Matt was on the cusp of puberty. Many of his autistic behaviors had disappeared by then; hand-flapping, spinning, echolalia, avoidance of eye-contact, need for routines, and so on, had slipped away one by one. He still loved repetition in both drawing animated characters and in watching his favorite movies and cartoons, but I understood that this was his way of teaching himself conversational speech and social interaction. I never thought of it as detrimental (and I still don’t). He was doing well in school and was on the Honor Roll every time. He needed time to himself each day and I gave it to him. He seemed so happy and content. He was more aware of his peers and wanted to dress like them, walk like them and was attempting more complex interactions with long-time friends. He even had a few sleep-overs during that time with a friend coming to our house one night and then Matt spending the night over at his friend’s house. Life was not perfect, but hope did shine brightly.
Then one day I heard sobs coming from his room and went to investigate. Matt was sitting on his bed crying. I sat next to him and put my arms around him and hugged him tight. “What’s wrong, Matt?” I asked as I rocked him slowly side to side. “I can’t remember,” he replied. I assumed he felt sad but didn’t know why. Sometimes hormones do that at puberty and in my quick assumption that he was experiencing a prepubescent hormone surge I didn’t prod him for a deeper explanation. He continued to cry, the anguish surfacing in giant waves of despair were tearing at my soul. “I don’t remember ANYTHING!” he screamed. It took me by surprise. Not anything? What does that mean? “What do you mean Matt, that you can’t remember anything?” And so the conversation began in which my son explained to me that he really could not remember being a child. He could remember last week, last month, and some of last year, but the further back we went the more obvious it was that most of his childhood memories were gone - all gone.
This was not a one-time instance. Over the next few years Matt had more days of shear panic where he couldn’t pull up in his memory even important events he wanted desperately to hold onto. When the all was said and done Matt had lost everything before the age of 10 and 70- 80% of everything from age 10 to graduation at age19. We’re talking years of memories slipping away and although new memories were being formed everyday, only a few were actually staying in his mind for recall. Calming him, comforting him during this time was heart breaking for me too. I couldn’t imagine how awful it must feel to not know something about your past. I would bring up certain instances from his past, trying to jog his memory, but although my intentions were good, it only made him feel worse. Amazingly, Matt stayed on the Honor Roll the entire time he endured the destruction of his own personal life history. It seems his short-term memory was still intact and as a result, grades remained stable.
The turmoil ended as adulthood set in and he again has memories of people, places and events – but only of the last 8-10 years. I think about it – almost obsessively. There are a few possible culprits that could have caused this dramatic change in his memory. During that particular time Matt had concurrently gone through puberty, had pneumonia (and had to be hospitalized for almost a week on IVs and antibiotics), and had a pneumovax shot shortly after his recovery. Since Matt is the only one who knows when it all began and he can’t tell me I am left to wonder. Was it one of those? Was it the combination of all three?
So I research the blogs and the autism sites trying to find a hint that other autistic children have experienced something similar only to find silence in this area. There’s no mention of this terrible aspect of his autism in others that I am aware of and yet, I can’t help but feel someone else had watched this heart-wrenching scenario playout in their own child. In my soul I feel there are others. Are there? I have come to the conclusion that what I must do is just ask straight out – have you ever known anyone with autism to suffer childhood memory loss? As a parent or a grandparent of an autistic child, I know you understand why I need to know, why I have to ask. So I am asking you, from one parent to another, are we alone?