With the release of some of the proposed changes to the DSM V regarding the autism Spectrum disorders, I have read a lot on the reaction from the special needs community. I am one of the few who is less concerned over the proposed changes to the definition due to my family’s experience with an Autism diagnosis. I have felt for years that in practice, professionals have expanded the Autism criteria to encompass many behaviors, like hyperactivity as a self stimulating behavior, that should not fall into autism and to make kids fit into the diagnosis when they shouldn’t. My belief is anecdotal and I understand that our story is atypically. But it does highlight some of the flaws in the system and the only way to improve the system for everyone is to recognize that stories like ours exist and discuss how we can prevent them from happening.
Each year we hear new numbers on how many children fall onto the Autism Spectrum. Currently that stands at 1 in 110. As we lived in one of the areas in which the CDC draws their information from (Missouri), my son would have been included in this reporting if he had met the age requirement (he was too young on the last study). The CDC would have accessed his medical records, from the school, and seen several professionals’ diagnosis of autism and wham my son becomes 1 of the 110. Except there is one problem, he’s not autistic. My child is not autistic, but many people tried to convince us he was.
We started out journey into the Special Needs world when my son was 2.5 years old. His behavior was atrocious, he would only speak in short 1-2 word sentences. He couldn’t sleep in a room without every light on. He disliked shoes, tags, the list went on. We watched the same videos over and over for several weeks and then moved on to the next one. He parroted back to you whatever you said to him, sometimes repeatedly. He used sayings he had learned or memorized to answer questions, many of these from things he overheard especially movies. he had poor eye contact. He couldn’t even say his own name (resolved by having his tongue clipped). In many cases, this is as far as some professionals got and they declared your child is autistic, but most likely high functioning. Be glad of the diagnosis it will get you more services. Oh that same doctor also diagnosed my son with a Mixed Expressive Receptive Speech Delay (MERLD). By definition, one cannot be diagnosed with both MERLD and an ASD as the 3rd criteria for the MERLD diagnosis is that the criteria is not met for a Pervasive Developmental Disorder AKA the Autism Spectrum.
I sat in many a doctor’s office completely boggled. Each time I brought up the DSM IV definition, each time I brought up something that pointed away from Autism, the push was on to just make me accept the diagnosis. Even in the online support groups I had found, I was pushed and pressured to just accept the diagnosis and stop fighting it. His first school district told us that he was mentally retarded, could never been mainstreamed, and that we should prepare to take care of him for the rest of his life. He was barely 3 years old at the time. To this day, almost a decade later, I recall a conversation by email with one mother. I was expressing my distrust of the doctors’ diagnosis and listing all the things my child did that pointed away from Autism. One of the things I mentioned was the my child had no issues with physical contact, as many with an ASD do. In fact, he frequently and repeatedly sought out physical comfort, sitting in my lap for hours at a time, asking and giving hugs and kisses. The response I received was that I must have taught my child to accept some physical contact and that can happen because after therapy her child was taught to accept hugs from her. Perhaps it was the support groups I had found, but not a single parent of a child who had been diagnosed with Autism gave my doubts any credence. The answer was the same.. accept the diagnosis.
Well, we didn’t and I spent the next 3-4 years proving to the original doctors and the school system that my son was not autistic.By the end of kindergarten, my son have several hundred pages of medical records. He had undergone 4 speech langauge evaluations (3 within 3 months of each other) with each test varying widely. One test had him over 50% delayed in both receptive and expressive language, another test had him delayed 6 months in expressive and no delay receptively. Still another test put his delay between 6-12 months. He had seen 2 psychiatrists, 1 gave a tentative ADHD-HI diagnosis and said something else is going on that we can’t pin down, but your child is definitely not autistic or have hyperlexia (my son taught himself to read at age 2). The other psychiatrist said Aspergers. The school performed an IQ test on him (WPPSI) which was all over the place. His verbal IQ scores were close to 70, he maxed out the completely non-verbal tests (coding and block design) and other things scattered in between. The psychologist remarked that my son was reading her notes during her observation of him. It was notable because she wrote only in cursive.
Again the school told us he’s autistic. He has similar behaviors and such as other kids who are autistic. Again we said no. Around the age of 4 I stumbled upon a condition called CAPD (central auditory processing disorder). What I saw described my son perfectly. It made sense. His IEP team in kindy disagreed with me. They refused to perform the evaluation, stating that it was highly unlikely that my child had an auditory processing problem, your child is autistic. This was even after we had a full neuropysch evaluation which had already ruled out autism. The same evaluation in where the same teacher who made the quote above, filled out rating scales that came back at under 80 (a score of over 110 was indicative of an ASD). That evaluation gave us the ADHD-HI diagnosis, confirmed the MERLD, and a high working IQ. But still the insistence of many that he was Autistic.
4 days after my son’s 6th birthday we had a CAPD evaluation done on him. The results were exactly as we expected. My child’s short term auditory memory was so poor that he could only hold a few syllables at a time. The audiologist explained that this is why he repeats things over and over. It is the only way to hold the language long enough to work through the short term memory and get it processed. During the evaluation I noticed that the audiologist held a screen over her mouth. When I asked why, she explained that many children with CAPD lip read. Since they are trying to read lips, they tend to not make eye contact. His ability to hear with 10 decibels of background noise was impaired. In one ear he heard 40% of the words said, in the other ear he heard 48%. The numbers add up. In a 10 word sentence spoke to my child in the classroom, he would only hear 4-5 words of it and his auditory memory would only allow him to remember and process 1 or 2 of those words. Everything made sense.
It took another year to convince the school he was not autistic. In that same year we worked hard at addressing the CAPD issues. We had to retrain his teachers to pull him aside and tell him things in a quiet environment, to give things in written form. As they did, many of those red flags for autism slipped away.
Today, my son still is classified for Special Education as Educational Autism. It is the category that best describes his unique issues – residual language issues from the MERLD, some social delay from anxiety, ADHD (perfectionism), MERLD, and the CAPD. It’s hard to even want to be social when your afraid of peers reactions when you miss a word, don’t get the joke, or respond to what you heard which wasn’t what was said. And the final component behavior. This is where his anxiety and ADHD show their true colors in his ability to control his emotions. It has worked well beyond the expectations of any professional that saw my child when we first started. He’s gone from an IEP with almost 40% SPED time and a 1 on 1 aide, to an IEP with less then 5% SPED time (speech). Would the result be the same if we had just accepted the autism diagnosis and stopped. I don’t believe so. For my child, CAPD was the key.
CAPD occurs in about 5% of school aged children. The exact cause is unknown, but there may be some correlation between persistent ear infections and CAPD. My son was diagnosed with periorbital cellulitus at 5 months of age and from that point until almost 11 months of age had persistent ear infections with fluid in the ears. His hearing tests put him at the lowest possible scores you could have to pass, despite being unresponsive to many noises in a normal environment. MERLD also occurs in about 5% of children and is commonly associated with ADHD, which occurs in about 7-10% of children). To this day I believe my family got caught up in the boom of ASD diagnosis. It was what was on everyone’s minds and in our case it blinded many professionals to what else it might be