Want to connect with other special needs families? Come join the conversation at December 4, 2009
How do you define your child's disorder?
My family spent Thanksgiving in Carmel with my dad. My aunt Carol, who hadn't seen Matthew since he was diagnosed with autism as a toddler, was struck by how friendly he was.
"I thought they were all in their own world!" she exclaimed. "I know I shouldn't have to ask, but what is autism, anyway?"
It occurred to me that all parents of special needs children should write down an explanation of their child’s disorder so that you can refer to it when people ask questions. I know that I get all tongue tied when people ask me to ‘splain autism.
"'Splain in to me, Lucy"
Heck, maybe we could all create a handout! Here is what mine would say:
1) Autism is a neurological disorder; not a disease. It is a broad spectrum disorder, meaning that people with autism can be a little autistic or very autistic. Thus, it is possible to be bright, verbal, and autistic as well as mentally retarded, non-verbal and autistic.
2) People with autism share deficits to some degree in three areas: social interaction, verbal and nonverbal communication, and repetitive behaviors or interests. In addition, many have unusual responses to sensory experiences, such as certain sounds or the way objects look.
3) "They" are not all alike. Individuals with autism have unique challenges, quirks, and interests. People with autism can be hard to figure out. Don't be afraid to ask their parents or caretakers questions.
4) There is no proven cure for autism-yet. Autism is a lifelong diagnosis. That's not to say that people with autism don't improve, because many improve radically with treatment. But even when people with autism increase their skills, they are still autistic, which means they think and perceive differently from most people.
5) No one is sure what causes autism. Theories range from mercury in infant vaccines(a theory that has been hyped up by celebrities, not scientists who maintain there is NO link)to genetics to the age of the parents to almost everything else. At present, most researchers think autism is caused by a combination of genetic and environmental factors – and it's quite possible that different people's symptoms have different causes.
Follow up from last week:
My friend who was in the bicycle accident is pretty banged up, but off of the ventilator. He is in a rehabilitation center and on the mend. I’ll keep you posted. Thank you for your good wishes!
Laura
p.s. My book A REGULAR GUY:GROWING UP WITH AUTISM makes a great gift and is only 10 bucks and free shipping-if you order by Monday, you can get three books for $25.00 and free shipping. Just CLICK HERE. NO pressure-just a special holiday offer I thought you would like to know about.
xoLaura
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Comments on How do you define your child's disorder? »
Sarah @ 10:22 am
Great post. As soon as I read the "I thought THEY" part my stomach just churned! I like reading and learning positive response approaches like this. Otherwise I tend to lean towards being kind of snotty and totally irritated with people. Thanks!!!
Stimey @ 10:34 am
Wow. I think I should print this out and hand it out to people who ask me the question. I'm glad to hear that I'm not the only one who gets flummoxed when people ask me that question.
Mama @ 10:49 am
I remember sending an email out to everyone we knew when we got a diagnosis. It was a list of anything and everything on autism, to ease the comments and questions – helped a ton!
The Gang's All Here! @ 11:19 am
This is a great post. I just this week asked my daughter's speech therapist to help us find some short, easy to digest informational pieces on how to think about children with unilateral hearing loss. I need to find a way to share it with friends and extended family members that helps them see that we aren't "babying" her but helping her learn to cope in this big noisy world in a way that aids her connections. Thank you. Maybe I'll write my own brochure
Amanda Daybyday @ 12:08 pm
That's awesome. Like a business card or something. Would be wonderful to whip it out and just say, "here". I get so sick of explaining it all the time.
Marie @ 12:40 pm
Great post! People just really don't understand and as annoying as their comments seem, I think most are doing their very best to understand in their own way. I actually wrote a post last night with a short explanation of my son's disorder. It too is complicated.
Barbara @ 6:14 pm
Excellent explanation, Laura. Many will benefit from this post, even if they don't comment.
I.love.Lucy.
From Ricky, rehabilitation is bery, bery good!
Azaera @ 7:47 pm
I find myself explaining Septo-Optic Dysplasia a lot. And I tend to go into too much detail and use too many medical words. I always forget that just because I understand it in the same terms as his specialists doesn't mean everyone else will. When people ask me about him or if I decide to tell them about his special needs I usually start with the "he's legally blind" bit and explain he can see a little bit, but only about 2 feet away and that no it isn't treatable. I always get questions about that, "Can't they just do laser surgery?" "Can't he get glasses?" etc etc on and on. Then I move onto the "he also has hypopituitarism which means he doesn't produce hormones like we do." It's a long and complicated explanation I find, and I tend to have to explain it a lot, because no one has ever heard of it except his specialists. And even then most of them haven't seen many cases. Even his endocrinologist didn't diagnose him with it, I was the one who suggested it to him.
Oh and as for the Autism thing, I work with an Autistic child (who I just love of course) and I've taken workshops to learn all about Autism and they have these really cool "bugger off" cards you can hand people. Like at the store if your child is having an episode or a tantrum and people give you those stares (you know that look) you hand them this little card that says "Please don't let my child's behaviour disturb you, my child has an Autism Spectrum Disorder" and it goes on to briefly explain Autism and there's a phone number and website for an Autism Association. I just thought that was kind of a neat idea.
Trish @ 9:58 pm
I like your explanation a lot – it definitely hits the main points. I know the Autism Society of America has small cards that you can get to hand out to people with a brief description of what autism is and ways to interact with those who have it.
I've seen the "bug off" cards Azaera mentioned as well, but I'm not cool enough to do that – I would feel like I was telling the other person off. The ASA cards are more objective and calmer.