Several people have asked my opinion about the "actually autistic" movement that is rising up against Autism Speaks. This group declares that they don't need "a cure" & are not a puzzle that needs "figured out". They are wonderful just as they are, and the world just needs to accept them. Since this group is able to organize & use social media appropriately, I must conclude that they are predominantly comprised of highly functional individuals on the spectrum or those with Aspergers. (Those who are moderate or severe would likely never be able to appropriately navigate social media or even wonder why they should want to.) In contrast, both of my boys are right on the moderate/severe line. Here goes:
1.) We don't financially support Autism Speaks. We haven't in 4 years, since I researched how little of the funding actually goes to families of individuals on the spectrum. We support the Autism Society, specifically the Autism Society of Central IL, because I personally know their funds directly benefit families in this area.
2.) I WILL support "Light it Up Blue" and the puzzle campaign for Autism Awareness. No other group has even come close to the worldwide awareness AS has been able to achieve. Period.
As the mother of one nonverbal child and one with severely delayed communication, autism IS still a puzzle to me. My boys CANNOT adequately express their thoughts, their sensory triggers, and their struggles. As their mother, I would be remiss if I stopped trying to piece together their condition so that we can do our best meet their needs.
3.) I don't want to "cure" who my boys are. Their personalities are perfect, and their autism has made those personalities what they are. Autism has provided them with a unique lens through which to view the world, and everyone in contact with them has been blessed by their unique little personalities.
However, if I could cure their accompanying sensory integration, communication, and social difficulties, I would do it in a heartbeat. I have chronic, Hemiplegic migraine. I'm in pain. A lot of it. All. The. Time. The kitchen clock is trying to kill me. So are the twice-hourly trains that run a block from my house, the sun, LED lights, and those stupid blue headlights people put on their cars.
Likewise, my boys have sensory triggers that cause them physical pain. A lot of it. All. The. Time. What parent in their right mind wants their child to be in chronic pain??? Who wouldn't do whatever they could to stop it? As a Mommy living with chronic pain, I am even more determined to save (even cure) my boys from facing a similar fate. I'm not one for colorful language, but 3/4 of my week I live in pain hell, and I DO NOT want the sound of someone crying, the buzzing of lights, or a fuzzy texture to send my boys to pain hell, too. I'd give ANYTHING to cure them of it. Period.
The real issue is that Autism is a spectrum, and people at both ends of it are fighting with each other, insisting to the other side that they are right. Both sides are right. Both sides need to take into consideration everyone else in the middle. EVERYONE needs acceptance. Period. This debate is flawed because neither side recognizes the "spectrum" in autism spectrum disorder. I love who my boys are, but I will never stop fighting for the opportunity to help them become the best versions of themselves possible.
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