When it’s not Autism, but everyone tries to convince you it is.

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

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16 responses

  1. Thanks so much for your column! You make a lot of very important points, particularly the fact that language disorders look a lot like autism in young children.

    We have a huge message board for kids with MERLD and other language disorders. Many have tales very similar to yours. You can join us at http://www.naturallatetalkers.com.

    jodi

    1. Jodi,

      I think I was a member of the yahoo group back when we were first dx my son about 7-8 years ago. I will have to check it out again as I had to step back from most of my support groups and such to survive law school and then my husband’s schooling. Now that we are once again more settled, I am stepping back in again.

  2. So interesting Thanks so much for Sharing, I am on the NLT forum. My son is 4 and we have many of the same issues in regard to people wanting to label him ASD .

  3. Great blog post! Agree with others, I’m on the NLT forum as well as we dealt with the Autism label in a similar manner and I am happy about the new DSM 5.

  4. Oh, boy…I just started reading your blog. Per our Twitter conversation, I now can see the bigger context and it sure as heck seems as though you have a Maverick Mind (child and family) like mine. They really defy categorization and what a journey you took. I would love to see your reaction to http://www.maverickmind.com. Dr. Florance’s son was also diagnosed severly autistic, mentally retarded, deaf, and mute. I have no doubt you would thoroughly enjoy Dr. Florance’s book, “Maverick Mind.”

    1. I have the book on my list to check out. After what we went through I completely understand how parents wind up feeling defeated and let down by the system. Even more so when they have put their faith into the doctors but do not see any progress and things never get better. I am ever so thankful that both my self and my husband decided to go with our own gut and when things we were told did not make sense we kept on looking. I truly believe if we hadn’t my son would not be anywhere near where he is today and he has come a very long way.

  5. I love this…I was a weird kid, or so I have been told, and a few people thought I might be autistic. But, I was sociable and enjoyed hugging, particularly conversing with adults, I learned to read magazine-level articles (like my mom’s Ladies Hone Journal) when I was 3, and I tested early on with a genius IQ (170+), and was very quiet and well-behaved in school, so although my performance was erratic, nobody really pursued whether or not I had any type pf learning disability.

    As I have grown older, something has come up that never mattered in the 70s or even early 80s. I cannot listen to anybody and type or text. I also have an extreme degree of difficulty getting a phone number off a voice mail. I’ve really gotten to the point that I insist that people communicate with me over email, not necessarily for friendly touching base, but if there are facts and figures involved, I ask for an email and if someone doesn’t want to do that, because they insist it is faster and more convenient (for them) to do it that way, I say, “OK, go ahead…wait, let me write down that first number? Fourteen or forty? Yes to which? OK Fourteen as in 1-4 or forty as in 4-0? and then that is for Wednesday? OK let me write down Wednesday…OK wait what did you say while I was writing? I missed that? You said somebody should send it…oh, Susan should know about it…well does that mean I need to make Susan aware of it or that she knows about this if I have questions?..” and I go on being much more insistent about having everything being clarified and so on than I actually need to be, just so they never try to give me detailed information over the phone again.

    1. Denise,

      It is amazing how our brains work. I can sometimes get lost trying to write and listen (but I know mine is more my hyper brain turning off the audio and plunging into a train of thought). It will be interesting to see how my son ends up. I’ve watched at times were he can’t listen to us and see what we are trying to show him. It’s almost like we have to pause, let him process the audio and then take on the visual task. I believe that is why, when helping him with his writing, the best method we have is just to continuously ask “And then what?” and let him go.

      Thanks for sharing your story

  6. Thank you for this. With the dying fad of autism diagnosis, and the new way autism is diagnosed in the new dsm number 5, less kids will be diagnosed with autism when it isn’t warranted. The ONLY distuinguishable charecteristic of autism is facial expression recognition, and the lack of theory of mind and imagination. If your child has and does not lack any of these, they a NOT autistic!!

  7. Doctors tried to diagnose my daughter as autistic and finally, after much testing MERLD with ADHD and anxiety became the most accepted answer. I have a severely autistic brother-in-law, so I knew she wasn’t autistic and kept pushing. I had never heard of CAPD, but that’s something I’m going to talk to my daughter’s psych about. She had chronic ear infections and finally, b/c it was affecting her hearing, she had tubes in her ears at six years old, and the infections have stopped. That being said, it still seems like she has trouble “hearing” sometimes, though, when she is tested, she has normal results. “Fs” and “th”s she easily confuses and I have to tell her to watch my lips, watch how my tongue moves, etc. It also seems like she cannot keep things in her short term memory long enough to process them. I always thought that was part of MERLD, but now I’m not so sure after hearing you describe CAPD. What I found that works for her is turning vocab words into a song, then drawing a picture describing the word and then writing it over and over and over again. Sometimes, literally, 50 times. Thanks so much for sharing, you’ve really opened my eyes.

    1. For many people with CAPD (or APD as it is referred to more often now) music and words that are sung are easier to process then regular speech. I wish you luck in filling in the blanks with your child.

  8. Thanks for sharing your experiences. A book that may be helpful for parents dealing with some of these issues is the book- Is My Child Autistic or Delayed? by Susan Louise Peterson, Author and School Psychologist

    1. I loved the MisLabeled Child, as it fit my son to a tee. A group of other parents and I co-authored a book about APD called Same Journey, Different Paths which can be found on Amazon (kindl and paperback), at the publishers website and I beleive at B&N for the nook

      http://www.amazon.com/Different-Auditory-Processing-Disorder-ebook/dp/B00D2B3ZO2/ref=sr_1_1?ie=UTF8&qid=1376934206&sr=8-1&keywords=same+journey+different+paths

  9. Blaire De Victoria | Reply

    I just wanted to say thank you for this article and that I am glad I am not the only one to fight this fight. I’ve been trying to get my son speech therapy help since he was 2.5 when he turned 3 the school system instantly wanted to label him on the spectrum due to his expressive and receptive speech delay. Even though he always wants hug, cuddle, and love on all 3 teachers, or he cries or gets sad when a teacher dislikes something he does, he has no sensory issues, no tics, no stemming, and could care less if the routine changes. They based it on his speech and being a picky eater at lunch!!! Even his teachers do not understand the diagnosis. They say when it’s loud he acts like he can’t focus, but when children leave and it gets quieter he opens up and responds more. I know longer trust the school system because they said to just take the diagnosis and he will get help. I decided to go out of pocket and pay the copay to use the speech therapist at my son’s preschool this week. Thank you so much for this post!

  10. Great post! I love that you kept fighting. Your mom gut said it was wrong and you stuck with it. I am doing the exact same thing. Day in and day out. Thank you for sharing this!

  11. I think my son has never had autism though he was diagnosed with it quite young. He had behavioural difficulties due to food allergy. He is dyslexic and has something like CAPD. When I resolved his food issues I realised that he just was not processing sound in the same way as others. He was always very emotionally present and very full of empathy. He struggled with speech fluency and attention but this was put down as incurable and he was denied therapy. He has had help at school but no official recognition of his disability status. No one really wants to attach a budget to him. He is leaving school soon and I really do not know what he will do. He says he just wants to work somewhere quiet. This to me points away from Autism, and toward problems with sound. Autism is in the news all the time but we have been labelled wrongly with no right to fight for a different diagnosis.

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