Much is being written about the new definition of autism spectrum disorders for the DSM5, most of it not positive. I have to admit, I am one of those persons who is not only very skeptical, but also very disheartened by the new criteria. (Read Here and Here) While Special Education Advisor has several other articles outlining their thoughts concerning the DSM5 and receiving services under the IDEA, (here and here) I have several caveats.
To start with, you have to fall into one of the 13 categories. It truly depends on the state in which you live, as to how flexible their categorical definitions happen to be, not all are as “vague” as the California definition of autism-like characteristics. In fact even today in some states, one of the categories that may be the hardest to qualify for is autism apart from other health impaired. You really need to review your state’s regulations and make sure that your child fits into a particular category. Just because you had a dx in the past also did not guarantee services. There had to be a quantifiable need in place. So in many cases, even if your child fell into one of the 13 categories, but showed no educational issues, they did not qualify under the IDEA.
Honestly one of the reasons I initially felt that the joining of the different levels of autism into one category would benefit everyone on the spectrum is that now, no educator could say “Since your child has aspergers and that doesn’t’ fall under the autism category we do not have to supply them with services.” That was a mantra I had heard over and over again. They don’t service aspergers. The problem then became, since most high functioning students do not have learning disabilities or even speech and language issues, they then did not qualify for a 504 Plan either. I had hoped that by combining the entire different spectrum situations into one definition would have resolved this civil rights issue. Read here.
The DSM4 definition of autism was a boon to parents and children alike, never mind to thousands of adults who could finally understand why they functioned the way they did. It provided a community, a place to go for understanding, joining and support. The autism community understands each other and knows what it means to be autistic. I have said so many times, that when we started this journey into the world of autism, there was no community, there were no websites, there were no chats, and there was no social media. Noone understood what was going on with your child and there was noone there who could help. When you were alone with a child with a disability you were truly all alone.
Community proved the necessary needed support. It helps when people can point you in the right direction, even hold your hand and tell you lets see if we can figure this thing out together…or simply “you can bitch right here. We know what you mean. It doesn’t mean you don’t love your child and it doesn’t mean you are a bad parent or a bad person.” Each community needs a definition. Granted we do not have to accept the DSM5 definition. For we know what autism happens to be, but I worry about those who have yet to join, who may not even think that they belong and have people that will help them. I not only worry for those of us who know who we are and who are child are, but I am so concerned for those who are yet to be…I fear for them, and ours as a matter of fact, and for their right to be understood, respected and included.
The callousness of the psychiatric community to just flippantly take away this ability for human beings to understand themselves is quite frankly the height of hubris. For the lead doctor on the project to claim that he has singlehandedly halted the autism epidemic is Orwellian. You cannot stop a bacterial epidemic by changing the definition of the disease. You cannot stop the autism epidemic by changing the definition of autism. You can no more define autism out of existence, than the Nazis could try to kill disabilities out of existence. We in the autism community know what autism happen to be…too bad the doctors putting together the DSM5 apparently have no clue.
While many of us are facing the probability of having to fight for a new dx or category in order to get our children the services they need to continue to do well in school, there is another very overlooked aspect to the new DSM5. Eventually everyone graduates from 12th grade and needs to go out into the world.
There are SAT, ACT and PSAT accommodations that need to be applied for. There are college and possibly graduate school accommodations that need to be applied for. There are professional licensing test accommodations that need to be applied for. There is a world out there that does not understand invisible disabilities. There are social security disability supports and Medicaid supports that may no longer be available. There is protection under the ADA that may no longer be available. And these are just for those who go on to post-secondary education.
What about those who are not capable of higher education but do not qualify under a disability? What will happen to them? Who will help them? Where will they go? I once read a beautiful story in the New York Times written by a mother of an autistic child. She said her heartbreaks because she worries…who will love her child once she is gone? Well my heartbreaks because who will not only love our children once we are gone, but who will help them if society says they have no reason to have problems or issues, once we are gone?
The world beyond the IDEA is not an easy world for those with autism. But the accommodations that many receive enable them to move beyond the world of menial labor, and dependency. It enables those, like my boys, to use their innate intelligence and produce a future of their choice.
However, if they no longer have a disability or the disability is not considered as life effecting as autism, things will change for them and quickly. Will they get extended time on tests, the ability to have a para, will they get breaks in between tests and will they be allowed alternative location and use of a computer? Will the world more or less understand when they no longer carry the label of autistic but rather simply ADD with maybe some social interactive issues? Will they be seen as intellectually deficient because they need pragmatic speech language instead of someone shaking their head in understanding and saying …”oh autism, that’s why they are so smart but can’t participate in hum-drum-chit-chat*…” Will they be allowed to learn and develop those needed life skills as they continue growing intellectually or will they be labeled “possible threat” because they lack social appropriate perspectives and there is no category they fall under?
Will those who lose the designation, autism, then lose their adult services, which by the way are not so easy to qualify for in the first place? Who will help them learn job skills? Who will help them learn life skills? Will they still be eligible for group housing? Will they still be eligible for social security and Medicaid if they cannot work due to their disability, a disability that they no longer have? How can the ADA protect people who do not have a disability no matter how life altering is their neurological differences? How can the ADA guarantee access to someone who yesterday had an autism spectrum disorder, but today has no issues according to the American Psychiatric Association? How can the ADA protect someone who has no disability if they fail to interact appropriately with the police and with authority figures?
Simply because the APA changes the definition of autism doesn’t mean that your child will not need support their entire lives, it is not abracadabra “cured.” The definition change does not mean they won’t need OT, PT, speech therapy, counseling, life skills, job skills, behaviorists, social skills, psychological counseling, para support, educational supports and societal supports for their entire existence. The need for these therapies and services does not disappear simply because your child reaches their majority. We just restarted pragmatic speech and behavior therapy again for the boys. What it means is that it is all on your shoulders, all the time, throughout every stage of their lives, not that it wasn’t before, but now, you get no help whatsoever, ever.
This new definition, which has the possibility of undiagnosing the overwhelming majority of those who have been dxed in the last twenty years, means that society has no obligation to help you or your child, no matter how much you pay in taxes, no matter how good a citizen you happen to be, no matter how many years you served in the armed forces. Your insurance company does not have to either pay for services or reimburse you. The state, or federal government, does not have to either pay for services or provide your child with access to adult services. There was a terrible dirth of adult services for autistics before and the ones that were out there serviced so very few. Now the programs will have no need to grow, change and progress.
If you thought it was tough now, just wait. Instead of things getting better they have just gotten infinitely worse.
Personally, I hope there is a special place in hell for these members of the DSM5 committee.
Elise Ronan. A parent of two boys, now young men, with aspergers. She is an autism advocate who blogs about practical solutions for raising children on the autism spectrum. Her blog is Raising Asperger's Kids, http://asd2mom.blogspot.com and you can reach her on twitter @RaisingASDKids.