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You're Right. My Son Doesn't "LOOK" or "ACT" Autistic...to you.

10/5/2015

13 Comments

 
There's nothing wrong with him
I can't count the number of times I've heard it. 

"There's nothing wrong with him."

"He doesn't 'look' autistic."


"He must be really high functioning", "You're so lucky, he's verbal", "That's totally normal behavior for all kids", "We never called it autism, we called it lack of discipline".  I could go on and on, but you get the gist.

It is something that those who have children on the spectrum deal with daily.  A lack of understanding that a child or adult can be brilliant, witty, funny, mobile, verbal, intuitive, seemingly functional......yet, disabled. 

"Disabled" for so many correlates to something which is physical, obvious, apparent, and easily reconciled by obvious observation.  Because my son seems "so smart" (which he is), many assume there can be no merit to him being disabled.  Sadly, the majority of those who feel this way, are those closest to him. Family, friends, those we interact with daily. Should you try and explain the part of the spectrum which affects how information is processed, or how seemingly normal everyday interactions are misinterpreted, or how my son cannot make sense of your facial expressions or your tone of voice, or whether you are joking or being serious - it is easily dismissed, because, after all, "He's so smart. There's nothing wrong with him".

Our son celebrated his eighth birthday in September. He has been homeschooled until just a week ago.  He has other medical conditions, which up until this year have made it impossible for him to have the stamina or general health to attend school.  Through extensive medical care, surgery, extensive therapy and over a year of physical healing and progress, he finally expressed his interest in attending school.  With that, of course, comes a whole new round of evaluations, testing, and the mother of all things which turns special needs mothers into full fledged "mama bears".....the IEP.

I've heard horror stories about the process of getting an IEP in place for your child.  I was honestly dreading it.  I had been told to be prepared to "go to battle" for my child. I was told many IEP's involve lawyers.  This was all a first for me, so I prepared myself for the worst. Honestly, I had nothing to be concerned about. I am one of the lucky ones who lives in an area where autism and it's relative issues are respected by our school administrators. My son's core team of therapists, his service dog and my opinions of his needs were accepted and respected with open arms.

What I didn't expect from the IEP process, was the slap of reality on paper in my face.  It honestly was nothing I didn't already know, however, it was there, spelled out in black and white. 

After seeing what my son's struggles look like on paper, I first wanted to punch something, then cry in my closet for the struggles which my son endures daily, but which are so often minimized because "He doesn't 'look' or "act" autistic".  I then found myself with this overwhelming urge to scream from the rooftops "YOU SEE?! DO YOU GET IT NOW?! DO YOU SEE HIS REALITY?!"  I desperately wanted to shove his test results in the face of every single person who has ever minimized his struggles because "he seems completely normal to me", "at least he's verbal", "yeah, but he's so smart, you should be so grateful".  I wanted to scream for my child "RECOGNIZE HIS STRUGGLE, not your own perception of the lack of validity of it, because he carries himself well enough for your social acceptance". 

Guess what? My son's autism ISN'T ABOUT YOU or your thoughts, or opinions or acceptance or refusal of acceptance of his disability.

However, each and every time HE HEARS YOU dismiss those things which are a daily struggle he has worked so hard to overcome, you create yet another hurdle for him to endure.

You are teaching him that no matter how hard he tries, there are those who will never give him credit for how hard he's worked, and how can that feel to a little boy?  How would any of us feel if we were in pain, or suffering our own battle, whether it be obvious or internal, if all we ever heard was "suck it up, there's nothing wrong with you"?   I'm all about teaching my child that autism doesn't have power over his capabilities. I'm all about teaching him he can be all he can be.......but I will never accept him being demeaned, belittled, reduced, dismissed or scrutinized for the amount of effort it takes on a daily basis for him to continue to excel in a world which doesn't (and isn't obligated to) make his life a piece of cake.

My son doesn't 'look' autistic. My son is incredibly smart. My son also has struggles which you may never notice on the outside, unless he does something to offend you, or anger you, or cause you to question his parents. You will be oh so quick to make a determination as to why he is behaving the way he is, but chances are, you won't include the disability you cannot easily see.   My son needs you to understand him, should you claim to love him. 

He doesn't need judgment based on what you assume you know, because of what you perceive you see.






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13 Comments
Teresa
10/5/2015 07:13:53 pm

Mel, I'm with you on the IEP process. It took us a year to get Trevor into 504, his new school has already started the SPED paperwork to evaluate him for SPED. I'm so glad we are in a smaller district now and I'm teaching right across the street from him. Our process was a nightmare because the school he was at last year didn't want to help him. I am so glad that you didn't have to go through that. I pray Izzy has a wonderful year.

Reply
Michelle D
10/5/2015 08:39:45 pm

You and BL and the girls have given Izzy such wonderful support (and mama bear claws!) that his successes are note worthy. Hidden disabilities can be the hardest to be understood or even acknowledged. Bless you and your family for giving him the support system that will bring him his best success regardless of how he "looks". God Bless

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SFA
10/5/2015 09:49:51 pm

IEPs are indeed a beast! However, I will say after my son was put on one we saw the most growth we had ever seen in all his education combined in the first full year on an IEP! Your son IS at a great school! Yay!
I feel awful for you and what you describe above. I hope that people who may not understand autism would at least be smart enough NOT to speak about it or challenge it IN FRONT OF HIM!
But some people really are idiots! It's sickening.
Others may be kindly naive. But they have tact! NO ONE SHOUKD EVER BELITTLE HIM! Or challenge his very own parents! It makes me want to #chucknorris them in the face! 😂😂😂😂

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Sami
1/5/2016 11:26:18 pm

My oldest two boys have had an IEP for 4 & 6 years. I never had to fight to get them what they needed. We live in an excellent county with great people and a small school district. I'm talking like class size of 20(for the entire county). I feel for those who have to fight for them. My mom heard all these comments you have with my sister and it was devastating. People wanted to understand and gave "at least" statements instead. I'm glad you were able to find the help without a fight.

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Jana
10/24/2016 03:40:12 am

It is a triumph to see a parent at a Parent's meeting for Children who have Disabilities, slam the table and say "I knew it!" After learning they can bring an Advocate to an IEP meeting.

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Jane
10/24/2016 04:29:57 am

Great read ,I have been there and know how you are feeling shame that twenty years on people still have little understanding

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Kelli
10/24/2016 04:46:07 am

Love this. My son's struggles have even been belittled by members of our autism community because he's not "autistic enough". Because they see a person who can seemingly function (he's 17 now). They don't see what it takes for him and out of him to do that. They don't know the work he's done for years to manage his environment and manage with his environment. They don't see the extra work he has to do, for example, to function in a regular classroom setting. They just want to belittle us and demean our struggle.

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Jeri
10/24/2016 04:55:51 pm

FINALLY!! someone else has heard that stupid phrase.."not autistic enough"!! My girl is also 17. We've fought for years to get help. Got her first 504 in 9th grade..will graduate this school year! She is Aspergers.

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Tanya
10/24/2016 09:00:26 am

Thank you so much for this article. I could have cried when reading it. It literally sums up everything I feel. I constantly feel like I have to somehow justify my son's condition. It's exhausting and heartbreaking. It helps to know I'm not alone in this. God bless you. xx

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Jen
10/24/2016 10:13:33 am

This is pretty much everything. I don't think I could have said it better. I have stopped trying to make people understand. We keep our family unit tight. As for the schools, they understand my stand. I will fight for my child, for my children. Stay strong, you are not alone.

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SharonRose Pro
10/24/2016 10:35:09 am

Amazing blog. My son has a similar situation and you, grizzly mama bear, are not alone! Keep blogging. Keep fighting. Keep loving. It's a tough journey but, the rewards are great♡ God bless!!!

Reply
Andrea
10/24/2016 01:23:16 pm

Thank you so much for saying what's been in my heart for so long!

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Naomi jonescase
10/26/2016 09:26:08 am

I am curious to the symptoms of this
Disorder...my son also suffers from some things and I am always ready for information. U have a brave lil boy.

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    Melissa Littles is a published author, blogger and legislative advocate for Law Enforcement Officers and their families, as well as an advocate for Autism.  To learn more, see our "About" section.

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