DSM Conundrum: Time to Get a Grip

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,

 

Elise

 

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About Elise Ronan

#JeSuisJuif #RenegadeJew... I am, therefore I write...
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12 Responses to DSM Conundrum: Time to Get a Grip

  1. Unknown says:

    Hi Elise- I really like reading your blog, my daughter is only 8 so we don\’t deal with the same types of issues but it\’s still really informative. I am uncomfortable with losing the Aspie designation even though after we received her diagnosis and I started calling around for programs and help and was repeatedly told no we don\’t work with Aspergers, only Autism. So I might be able to get access to more services but I prefer the Aspie label to the Autism one. I \’m not even sure I can explain why? She has sensory issues and socialization problems but also runs back and forth to stim and toe walks and flaps her hands and squeals. She can also read pretty much anything we give her, gets all A\’s and B\’s and loves her little sister dearly. So what\’s in a label??

  2. Elise says:

    Years ago when HSB was in first grade and we were trying to figure out a "label" for him, his special ed teacher told me that the labels are for the law. The IDEA requires a diagnosis in order to receive services. That the school/teacher deals with the issues that the child presents. The label really doesn\’t matter as far as what they do. Sometimes I think we, as parents, need a label to define what is happening with our child. We need to have something to focus on to fight against. Some existential unnamed disability just doesn\’t do it. Personally I think we had to give a name to the thing we hate, the thing that is making oru child\’s life so difficult. (Many people will disagree with me on this and among my friends we have an on going debate about seperating out your child from the autism or not and what does that mean. But that is a conundrum for a differant day)On the other hand, any professional who truely did not know that aspergers was part of autism and that children with aspergers present some very similiar issues as if it was classical autism, then doesn\’t deserve the title professional. Hopefully this will help your daughter receive the extra services she deserves. Sometimes peoples stupidity does amaze me.

  3. C says:

    Thanks for writing this. It\’s one of the issues that autistic adults diagnosed as Aspergers is currently having trouble with, getting services when we\’re perceived as not being autistic, and therefore testing too high for supports. In reality, a lot of us need supports and help, and the lack of understanding that Asperger\’s is autism keeps us from getting help. Thank you,Corina

  4. Elise says:

    Corina- you are very welcome.

  5. J. says:

    The Aspie label narrows the autism label. It does for the Aspie what the words "spastic quadriplegic" do for son 3\’s CP. It\’s like an adjective. We say Sean is autistic, specifically Aspergers.

  6. Unknown says:

    Elise, you give me so much to chew on. My 10 yo. son was diagnosed one week ago today as Asperger\’s, so we\’re still grappling with ALL the terminology. I guess for me coming into it new, I understand the usefulness of a narrower term like Asperger\’s, but I can also appreciate the idea of seeing autism as a broad spectrum, containing people who are highly functioning and perhaps only have a few autistic traits, all the way to a much more profound manifestation of traits.

  7. Elise says:

    Hi J- I think to use aspergers as a na djective is what we are going to be doing from now on. I don\’t think they got rid of it per se but that it is rolled into the diagnosis, it is officially part of the autism spectrum now not its own DSM number. In my humble opinion its not any differant than before for my boys, I just think that it will have a positive effect for those seeking services in many cases.

  8. Elise says:

    Hi. Nettie- welcome. I know it is a hard diagnosis to understand and accept at times, but there is a wonderful community out here for you. If you twitter we meet every morning from 9-11 (est) we are called @thecoffeeklatch. You follow us by clicking on the follow button and then follow along and join in the conversation at http://tweetchat.com/room/tck. I f you don\’t want to use tweetchat you can just put the hashtag #tck at the end of your tweets and search in the search box for all the other #tck tweets. We discuss all kinds of issues and you would be surprised how many issues overlap form one disability to the next.Would love to see you there.Send me an email if you need elp with it. Also send me an email if you need some questions answered. Also if you are on twitter let me know. I have a wonderful supportive group of moms and dads who wuld love to meet, greet and support.

  9. Unknown says:

    This gets complicated for me not so much on a personal level as on a professional level. I truly believe that the intentof the change IS to make it harder for districts to deny services and easier for parents to get services for their kids, however autistic those kids may or may not appear to outsiders. I\’m an adult whose autism is pretty much invisible, but parent to a child whose autism is quite obvious. I have no desire to distance myself publically or privately from people with more obvious autism, because to do so would be to distance myself from him. No one is gonna argue me into that. He\’s autistic. I\’m proud of him, and any commonality I have with him is an asset. Period. As an advocate though, this whole thing gets more complicated, for though I have no doubt that the the intent and basic content the new diagnosis will eventually help us all, in the short run I worry about my clients. In the suggested new version some of the broad criteria for the required level and type of language-delay might be used as an excuse to declassify very verbal kids. It\’s my job to make the strongest case for services I can at IEP meetings, so any excuse anyone can use to weasel out of giving kids services is a problem for me, not as a person on the spectrum, not as a parent, but as an advocate. So while I choose to have faith in the results, I worry about the process. That\’s just my job <G>

  10. Elise says:

    carol- thank you for your incite. It is truely amazing the amount of angst and anxiety this entire process has brought to the autism community I wonder if those changing the DSM truely understood the upheavel they are causing. I do hold out hope however, that it will be for the best and that it will help those otherwise who have been denied services. I understand your concern about verbal children and services, but if aspergers, which is highly verbal, is included in the new DSM it should be apparent that autism does not exclude but include the higher functioning. That is my hope anyway.

  11. Unknown says:

    While you certainly can\’t please all of the people all of the time, and it is not only language, but services that are at stake, I betting on a negotiation in good faith on all sides of the issue. It is my understanding that the folks in charge of changing the DSM are talking with adults on the spectrum, which is always an excellent sign. I\’m sure that if somehow the authors of the revision weren\’t aware before of the vast implications of the change, they must be by now. If everybody behaves reasonably (and I understand this is a big IF, because people are often frustratingly illogical), I\’m quite sure some compromise will be reached. I plead guilty to the peculiar naivte about hidden agendas many autistic people share, but even taking that into account, I too remain hopeful that everything will work out in the end.

  12. Pingback: Proposed DSM-5 Changes & Autism: Future Implications | Special Education & IEP Advisor

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