I have decided to put my two-cents in on an issue that has arisen in the autism community. Now you know that I generally do not talk about controversial issues. I did discuss healthcare, and have mentioned the holocaust (here, here)on occasion, once in reaction to some anti-Semitic tweets I received on twitter. But in general I stay clear of vaccine, biomed, alternative treatments (like hyperbaric), DAN, Jenny McCarthy or anything that is considered a hot topic. Oh I do put in my opinion on some other blogs, no one can ever say I am a shrinking violet by any means, however my purpose in writing Raising Asperger’s Kids is to try to give practical constructive advice that parents can implement in trying to support their children on the spectrum. Now that has even led me to a conundrum. The authors of the DSM which categorizes the psychiatric disorders in the American medical community have now folded aspergers into the wider autism spectrum disorder. Apart from the obvious, do I really have to change the name of my blog, or in a rather sarcastic paradigm have my children ceased to exist in some way in the eyes of the psychiatric community, I thought to myself what could be the implications of this for our children.
I guess in some small way it gives us, the parents of asperger children, some sense of comfort to think that our children are more functional than an autistic child. That they in some way have a better chance of a future. That our children, while living with a disability may never need full time care, will have a marriage partner, children, home and a profession of their choosing. It gives us comfort to know that they will pass some typical milestones, like driving a car (well that doesn’t really give me comfort), getting that first job and applying to college and graduate school. There is comfort in thinking that they will not need to be dependent on the kindness of strangers after we die. At least that is our hope when we hear aspergers.
But is that realistic? Oh not the hope that comes with a diagnosis of aspergers but the idea that there is nothing about our children that is autistic or autistic-like. I know that the boys exhibit many characteristics associated with an autism diagnosis. Heck, in fact collegeman was diagnosed with PDD-NOS as a 5 year old, and believe me he had all the requisite markers; delayed speech, inappropriate social interactions, lining up of his toys, spinning, and the always popular auditory processing issues. He also had echolalic speech, hyperlexia and emotional disregulation. So I know very well that he was not an aspergers baby at that point. I write that he has gotten better; many people say there was recovery. I don’t like to use loaded words, because that brings up other issues that I will not discuss here, but those very autistic like characteristics have faded and he is left with a mind that obsesses, organizes differently and perceives the world in a totally different way. He still has social issues, some derived from his aspergers and some I truly believe derived from when he was bullied and alienated by the students in this town. He still needs support that typical college students do not, but I foresee a great future for him. Heck 15 years ago they would not tell me he wouldn’t end up in an institution his whole life. So who is to say?
Highschoolboy of course was different. He was never as affected as his brother. He had speech delay, and some minor social issues, he even at one point had started lining up toys (we put an end to that thinking he was just mimicking his older brother). He did without question have ADHD issues, OCD issues and loved organizing his toys. He did have sleep issues, which we resolved at 2 years old by buying him a red racing car bed (he was obsessed with red racing cars). The other issues came later, the awkwardness (complete with fine motor) and the need for OT, the mathematical list making, the computer obsessions and the emotional disregulation. Was he very different than his brother? In some respects yes, and in some respects not. We know he is savvier than collegeman. He is less likely to be taken advantage. He can lie like the best of them and he has so little patience for me that it is just a typical day in the teenage neighborhood with him. However, he still receives speech for pragmatic issues, he has a one-to-one to help him with his social issues and interactions, class behavior and appropriateness, he still is fairly awkward in his gait and his obsessions about computers, video games and film composition shows that there are some autism characteristics well replete throughout his genetic code.
So what do I think of the new DSM? Honestly, at first it bothered me. Just like when a neurologist had listed collegeman as having pdd-nos years after he had been rediagnosed as aspergers. I felt his accomplishment and all the hard work had been ignored. That he was not being given his due and that someone was taking from him his future. I know I was being silly then and I think it is still silly now.
Collegeman even describes aspergers as the good kind of autism; the one where you are smart but have social issues. He will give you an entire breakdown of where he needs help and why. I tell you that young man never fails to amaze me. Interestingly when I told HSB that aspergers was autism, he seemed surprised. I guess he had forgotten. I explained it to him and he finally said oh, and went on his merry way. The reality is, the labels don’t bother them. It bothers us.
There is a tremendous upside for everyone concerned that only a few people are talking about and that is how the change in the DSM will affect our children getting services. Where I live, the district is quite knowledgeable and understands that aspergers is a form of autism. They have listed my children continually under the autism designation of the IDEA (Individual with Disabilities Education Act). It has never been a problem for me to get them the services they needed. Yes I have had some problems over the years as I have documented, but it was never because someone had said to me that they did not have autism they had aspergers.
Well unfortunately for a lot of children out there that is exactly what the districts do. They refuse to designate these children under the IDEA because they are diagnosed with “ aspergers” and not autism. Sometimes they grant the children a 504 accommodation under the ADA (Americans with Disabilities Act) but that does not get them the speech, social skills or programs they may really need to learn executive functioning and emotional regulation. They only have to give them access, extended time, use of a computer, alternative testing room. The things that can help make an aspie’s life easier in years to come do not get addressed, because the districts found a way to skirt the rules. Then of course there is the child who receives nothing. Not even a 504. Since they do not have autism, so no IDEA. They test too high, no educational disability, because aspies are so bright, so no 504 accommodations. So here you have a needy child that the districts have found a way to not help at all. Well no more. It is time. Parents can come in armed with the new DSM and demand for their children their rights and the districts can try to skirt the law, but I would lay odds that they would lose. ( Just as an aside, personally I think that these particular district personnel already have a special place in hell awaiting them anyway.)
So what do I really think about the DSM change? We parents need to grow up and get a grip. Our aspies are autistic. They are just what is termed higher functioning. Does having this new label take from them their future? No nothing can take from our children their future. Heck if the wonderful Dr. Temple Grandin could create her own future in an age where most autistics were institutionalized and no women were ever allowed into cattle ranching our children have absolutely no excuse what so ever, unless we give them one.
Until next time,