The Label Game

Lukas was given his Autism Label in March 1999 [AC1] When we started ABA and read the Maurice Manual and other success stories, we had an image of what it must be like to have a “recovered” child. For some reason, I developed this image in my mind of a family doing 40-50 hours of ABA a week and the mother finishing out ABA on Monday, taking the child to a professional who claims “no autism” on Tuesday, and a big party on Wednesday with everyone celebrating and suddenly a normal life on Thursday with a final post goodbye to all the internet lists that the parent belongs to.

The day we got Lukas’ autism label removed was probably the single most anticlimactic day of my life.

It happened in May of 2002 and I remember more about the aquarium we visited on our way back than I do about how I felt when I was told that he scored a 19 on the CARS (Childhood Autism Rating Scale) and a nonautistic range on the ADOS (Autism Diagnostic Observation Scale).

I am grateful that Lukas has done so well that he officially lost his autism label after being evaluated by a third party who knew nothing about his history. Yet, it was not quite like I imagined.

What was the problem? I guess there is a number of things.

I have learned that parents often label shop. I am somewhat certain I could have gotten a different diagnosis for Lukas back in March of 1999 when his problems were the most severe. There is no definitive test for autism and if we had let the label bother us, we could have shopped for a new one. I think this ability to label shop cheapens the meaning of any label.

I think that getting an evaluation from a professional who doesn’t know his past is very difficult. You don’t bring a normal child into an evaluation. The very fact that you are making an appointment for your child hints that there is some issue. Can you imagine the following scenario:

Professional: So what brings you here?

Parent: Oh nothing. I just wanted to see if my child had any problems that I didn’t know about.

You have to invent a reason to bring your child in for evals if you want a professional to evaluate whether or not your child qualifies for autism. I fretted over this. Should I lie and say that he had been diagnosed with ADHD and a language delay? Would that then get us confirmation of this label? What if I asked for a second opinion on Central Auditory Processing Disorder? Or how about Semantic Pragmatic Disorder? What about Nonverbal Learning Disorder? Do I make up a disorder? Do I claim that I think there is something wrong and just want confirmation that there isn’t something wrong? If I mention ABA, then how can the professional rule out autism if they know he had the label?

The mere act of bringing your child into an evaluation will most likely get you some sort of label. Isn’t that why parents see professionals- to get a label? How can the professional bill your insurance company unless you get a label to bill- a diagnostic code? I was lucky in that I found a professional who evaluated children with language disorders for free as a part of his research. There was no financial obligation on his part to help label my child. He also knew that Lukas was a “late talker” and so I gave that as a reason to bring him for an evaluation. I said that testing by our district showed he no longer qualified for speech services and I wanted a second opinion. I didn’t think I could give a total history of all methods of intervention without being honest. I wrote down all his past diagnosis. Luckily, the professional didn’t receive it in the mail. He apologized for not having it on file. To our luck, this professional walked into the evaluation completely blind.

I was impressed by the fact that Lukas spent 3.5 hours being evaluated. The professional even called in one of our children so he could watch them interact. He did a 20 minute language sample which so many speech therapists no longer do. This eval was more thorough than the one done by his original diagnosing physician. Lukas sailed through the testing. I had mentioned that I was concerned about ADHD and the professional came out at the 2 hour mark and informed me that Lukas was still sitting and working co-operatively and there just didn’t seem to be a case for ADHD with a child who could focus that long.

But why was I not jumping up and down with joy?

There are many reasons I guess.

Lukas is not home free. He still has some minor language quirks. He is still on the hyperactive side. I see some minor social issues (mostly due to a problem of expressing himself in an easy manner) and I don’t see our work as done even though he has lost his label. He still needs some guidance. He still has some issues in organization. Is that autism? No. But is that normal? Well, I don’t know. I am unsure what normal is anymore.

Our program didn’t suddenly end either. It was a more gradual fading out of DTT and table work to naturalized training to more social training to more fostering of relationships. He went from 50 hours of DTT to 40-50 hours of community outings and social interactions. The consultant we used for our ABA program started stretching out her observations from every two weeks, to every month, to every six weeks to quarterly. It was such a slow process that it was hard to tell when the real formal ABA program actually ended. I was also conditioned to think about ABA programs and to create programs that our consultant had to wean me out of constantly creating new programs. I still find myself thinking that maybe I could create “one last program” for Lukas.

I think that I can no longer evaluate Lukas in an objective manner. I will probably always look for any possible autism residuals. The people who have worked with Lukas and know his past also tend to do the same. Others who don’t believe that recovery from autism is possible, will never accept the removal of this label. To truly give Lukas a fresh start, we will have to move and hide all records of his label. Even if we seal his file with the school district, I know that there has been enough gossip about him that it will not matter that we have had his label removed. It is as if losing the autism label means that we will have to go underground and hide for fear of our past being found out.

I have images of asking my school district to seal Lukas’ file so that some nosy teacher won’t go digging into his past. I imagine the head of special services duct taping the file shut with a “do not read” sign placed on the front in yellow and black. I am still trying to understand what sealing a file means and how to do it.

Perhaps the biggest obstacle to feeling this big climax is that I don’t know what is going to happen in the future. I remember hearing how kindergarten is the big test of how a child will do. I now have the cloud of “yeah, he is doing well now but wait until the third grade. The third grade is all abstract learning and so many of these kids crash at the third grade.”

Even if Lukas goes through the 3^rd grade with flying colours, there is another cloud forming. I constantly hear how Junior High is hell for “these kids” and all those hormones will cause his autism to come back. It feels like more and more hurdles are being placed in front of us and others won’t believe it until we clear every single one of them. It is hard to enjoy the day he got his label removed because so many have predicted doom and gloom.

I have also not recovered from autism. I think I used to be a happier person before autism. I used to think the world was truly a nice place with people who mostly are there for the common good. All the egos, all the in fighting, all the violations of Lukas rights, all the nasty comments, all the fear have forever changed the way I view others. Autism can bring the best out in parents and therapists but it can bring the worst out in people as well. I am walking away from his label but the effects that autism had on our lives still remain.

Lukas is still on biomedical treatments. He still takes antiviral medications. He will always be gluten free due to the celiacs. Losing his official autism label didn’t take away his medical issues. I still get to pay 200 dollars a month out of pocket for his medical expenses that our insurance company won’t cover.

I just remind myself that Lukas is happy, healthy and that I knew all of this, even before his label was removed. It was comforting to have an objective third party confirm our beliefs but it wasn’t like he waved a magic wand and made the last three years go away- nor did he provide us with a crystal ball for what our future holds.

So much of what was three years ago still remains. The past is gone but hardly forgotten. Our credit cards are still loaded in debt. We still fill our monthly medication prescriptions. I still look at Lukas and search for hidden signs. The label is gone but not forgotten. Lukas is recovering. I have not.