Q&A Section: Childhood Diagnosis

This is the question of the month as featured in Issue Number 8

Q: I have been going to a pediatrician about my son and his social interactions, to say it nicely. The school is working amazingly with him and me. The pediatrician asked me to do an on line test as well as his teacher. Results showed that my scores stated a diagnosis leaning towards autism but the teachers doesn’t (which she told me she gave him the benefit of the doubt on most). He has decided to look in other areas (i.e. lactose intolerance (negative) celiac (negative) we are waiting for a sleep disorder test) blood work has been mostly fine. After talking with the school over and over again they are pretty sure from their point of view and with working with other children with autism that he does have a form of it and they think Asperger’s Syndrome sounds closest, though I would think PDD-NOS [Pervasive Developmental Delay-Not Otherwise Specified]. I did your test and it did turn out as mild-moderate. I told the pediatrician I know my son has at least an anxiety disorder and he just said ok. But how do I get him to understand that my son can be very mellow and quiet most of the time but under stress or just out of the blue he can do a 180? I feel like he just doesn’t understand what I am saying. My son concentrates very well… to the point of fixating. The pediatrician said well he can definitely focus well so it can’t be autism. I feel even more certain that even though it wouldn’t be severe autism it would definitely be Asperger’s or PDD-NOS.  How do I make the pediatrician look in that direction and not at just separate symptoms (like not sleeping or having headaches)… sorry this is very broken but I am a little frustrated lol.

A: Not to sound too blunt, but you need a new pediatrician.  A common misconception that parents have is that the longer a pediatrician has been in business –the more knowledgeable they are. I disagree.  Unfortunately, I have run across many pediatricians that think they know it all because they have been a pediatrician for twenty or more years.  What I have often found is that, although they may be experienced on medical issues and emergencies, they often don’t stay current with neurological and behavioral differences.  In plain English, they know the word autism but little else about it. I urge you to educate this pediatrician when you go into the office to sign a form to transfer your son’s medical records to another office. If you don’t educate him, who will? We don’t want more kids being left to the wayside.

Q&A Issue 8

For starters, your pediatrician told you that “he can focus well so it can’t be autism.” Really?!  Why don’t you ask Jacob Barnett and Temple Grandin if they can focus well?  Geniuses’ aside, in my own personal experiences working and raising children with autism, they CAN focus.  When my daughter was two years old she would align books by color or by shape all over the living room floor. She would spend hours focused. My floor would be covered in lines and rows of books. People with Asperger’s usually fixate on one topic or on one thing in particular.  Every autistic I have ever met can focus unless they are having a sensory related problem.

As far as the 180 degree change in behavior, it sounds like your son is either getting around to processing auditory information (audio-filtering) or being overloaded by sensory information and is having a meltdown. I don’t know for sure because I am not there to witness it, but I recommend bringing information on sensory processing issues and meltdowns to your appointment in conjunction with printouts about being able to focus as a high-functioning autistic.

Let us give the pediatrician some trusted resources:

About Focusing

http://www.livestrong.com/article/106976-aspergers-syndrome-symptoms-signs/

http://www.myaspergerschild.com/2013/04/list-of-symptoms-for-high-functioning.html – website owned by Mark Hutten M.A.- Counseling Psychologist, Home-Based Family Therapist and Online Parent Coach

About audio-filtering

http://nikigirl613.blogspot.com/2009/08/carly-fleischmann-autistic-girl-who-is.html – (references Carly Fleischmann see the News Section for more info on or by Carly)

About Asperger’s

http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit

For help finding a pediatrician, first make a list of the pediatricians that are covered by your insurance. Then research them online to see which ones got good reviews. Next, call and setup appointments to interview them. Ask them about their knowledge about autism. You can do a search for pediatric reviews by state if you are in the USA http://www.healthgrades.com/pediatrics-directory, if not then Google Pediatric reviews.

Good luck. Just remember you know your child better than anyone. If you think your child needs help, keep searching for resources. If you have any questions, feel free to email me at Leslie@AutismParentingMagazine.com.

All the Best,
Leslie A. Burby
Editor

2 Responses to Q&A Section: Childhood Diagnosis

  1. Speaking from experience as an autistic adult: It’s not focusing that’s the problem.

    It’s breaking focus that’s the problem.

    I concur that you need a new doctor – I had a child psychologist who was all “labels are harmful” as a kid and a such still don’t have a formal diagnosis despite being referred for evaluation every year in school (though my family doc has told me he’s almost certain I am autistic and I’m just saving up for the psychoeducational assessment that is by now pretty much just a formality at this point, given that we’ve ruled out all the other stuff it could be).

    Speaking from my experience and from the fact that every autistic adult I’ve ever met had this problem to one degree or another going through school: it’s only a matter of time before “different” means “bullied” for your boy, and you want to get the supports and accommodations of an effective anti-bullying strategy in place before it’s a problem. It’s always harder to play catch-up than it is to head off a problem ahead of time.

    As well, if your son has any of the commonly co-morbid conditions with autism (like dyspraxia, dysgraphia, or ADHD, as just three examples), you want to get those diagnosed and accommodations put in place before he falls too far behind grade level, and also before some jerk of a teacher decides to hold the rest of his education hostage to overcoming an undiagnosed learning disability (as happened to me with handwriting for six years – I have motor dysgraphia, so neat writing is a neurological can-not-do thing).

    Finally, you should consider finding him an autistic adult mentor when he hits adolescence – someone of his “tribe,” who has first-hand experience with his struggles and who can offer an insider’s view of autism to help develop strategies to either bypass or overcome (as appropriate) the challenges associated with it. The Autistic Self Advocacy Network can probably put you in touch with someone.

  2. After such a long journey, we finally have a diagnosis!!! ASD (asperger’s) was it and though that leads to other feelings and emotional personal issues, for my son it can be a great beginning to getting the help he needs with his escalating outbursts and social cue misunderstandings. Yes the pediatrician was right with the sleep issues, but eventually his office just stopped returning my calls so i took it upon myself to use the insurance i had from work to visit a psychologist. Feeling like i was starting over again was frustrating but she was amazing! And she worked as quickly as possible as to help myself and the school move in the right direction to meet his needs. Thanks so much for the advice!
    Oh and ischmgeek… i will take your advice as well and as he gets a little older i will try to find an adult mentor so he can have a more personal inspiration!!

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