Saturday, April 5, 2014

So tired of High Functioning being in the media everywhere!!!

I was reading  another moms blog the other day and I loved her post. The main idea of her post was how hard it was for people to understand severe autism when all you hear about in the media is "high functioning" autism or people who supposedly outgrew their diagnosis. I could have been the author of the post and it inspired me to share one of my pet peeves.I have many pet peeves in the world of special needs. However, one of them is how you only hear of the "high functioning" people with autism in the media or the people who "out grew" their autism.
In the beginning I hung on to high hopes of high functioning and out growing autism. Over the past two years, I have came to accept what three professional doctors and Trenton's highly trained therapist have told me which is this.....
  • If someone out grew their diagnosis then it was never autism in the first place
  • Too many doctors are way too fast to diagnosis autism because it is such a complicated disorder with various degrees..hint hint...these are the high functioning people
  • Too many parents want to look for something to blame for their lack of parenting and discipline so they look til they find the right doctor to diagnosis their child
Those are three of the many reasons that I have heard over the course of the last two years. I 100% believe it!

Autism is a spectrum with various levels on it. I do believe with the right therapies you can change your child from being on the severe end to the middle of the spectrum. Every doctor that Trenton has seen has told me that Trenton is a classic moderate to severe case of autism.  Now, when all you hear about in the media is high functioning...or should I say people who have claimed to have been diagnosed with autism...really frustrates moms like me! Trust frustrates every mother with a child on the severe end of the spectrum!!! I have spoke to many of them.....I know!

With this said, it is hard to educate people on the moderate to severe end of the spectrum when all you see in the media and social networking is the high functioning end or the people who have been misdiagnosed.

A brief part of report written by a doctor....

=In 1987, the Diagnostic and Statistic Manual of Mental Disorders (DSM) began broadening the definition of autism to include not only children for whom socialization is impossible, but also those with varying levels of ability to interact and function. What was once a devastating affliction known simply as “autism” evolved into a “spectrum” of disorders, encompassing everything from profound impairment to far milder challenges. Naturally, this more expansive definition of autism partly explains the exponential increase in diagnoses in recent years.
But many children whose symptoms significantly differ from classic autism—who belong only on the milder end of the autism spectrum, if they belong anywhere on the spectrum at all—are inaccurately ending up with serious autism diagnoses.
How does this happen? When doctors drop the a-bomb on a family, it helps to have an action-plan, answers, and ready resources at hand to reassure the frantic parents. Many states offer autism intervention services, but most don’t offer subsidized therapies for children who are falling off of the developmental ladder due to milder disorders—sometimes sensory, sometimes in motor planning or other areas. 
So parents whose kids’ challenges are less severe are often urged to accept a full-fledged autism diagnosis, as otherwise they would lose access to state-funded treatment, and might, down the line, end up ineligible for support services in public school.   The result is that the autism statistics grow and grow

 Unlike the media and some social networking sites, I am educating people on actual moderate to severe autism. I truly hope one day, the world can be educated more on the moderate to severe end of the spectrum.

A brief part of this other mom's blog....

There is a huge, huge range of abilities and characteristics all lumped together as "autism".  In the past, there was actually a separate name for the highest end of autism, Aspergers Syndrome.  But the powers that be, for whatever reason, have now lumped that in with all the rest.  If you see Temple Grandin, or hear about Daryl Hannah, or even see the often hilarious Autistic Reporter on The Onion, you are seeing very, very high functioning autism.  On the other end, there are children and adults like Janey.  Janey is nine.  She is not toilet trained.  She cannot be left unsupervised for a minute.  She can talk a little, but mostly only in scripted "I want.." sentences or in repeated phrases from videos.  She screams, cries, injures herself and doesn't sleep regularly.  Academically, she functions about at a 2 year old level.  She is autism, as much as people with college degrees can be autism.

Another pet peeve of mine is how people think that since Trenton is smart, he is just fine and his only real challenge is not talking. To you my friends.......I say click on my meltdown post and see how you would like to witness that every day!!! I have been told by many professionals that it is a clear indicator by your child's sleep where they land on the spectrum. Trenton has barley slept since he has been born.....

Many people with autism are smart. If it has to do with numbers, letters, shapes, and colors....then it captures their attention. Does not mean that they will ever be able to multiply 5 by 5. They are people who "label" and who have photographic memories.

Like I told my mother today..."It's a disorder where each child basically has their own disorder. You can't even compare your child to another because they are all simply different."

I  had the pleasure of teaching one boy with autism during my teaching career who could tell you everything about everything!!! Seriously!! He knew history better than any history professor at any college in America. He had a photographic memory. Sad to say he couldn't wipe his own butt, had no idea how the world really functioned, still had bathroom accidents in his pants, and would never be able to live on his own. Once again.....its a strange disorder and if you have met one child with autism, you have met one child.

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