Every one has heard about the facts about autism these days. It's in the main stream press, on the politcal agenda and and all over the web. Research says 1 in every 100-150 children receives a diagnosis of an autism spectrum disorder. But have you heard about the thousands of children with undiagnosed disabilities? What you ask? - with all the excellent hospitals, research and genetic testing now available? There are non-profit support organizations, list servs, blogs and more out there to support parents like us and our snowflake kids. But kids like my son rarely make the news (and then only the sensational tabloids) and there aren't enormous fundraising machines supporting wide scale research, or lobbying groups pushing for legislation and class action law suits. We struggle along trying to do the best for our needy kids and our families.
Occasionally family members and friends ask if our son has autism because he did not look them in the eye or occasionally does some repetitive act. No, I say, he has a developmental disability and like autism, our kids may become over stimulated and do not adapt to social norms. Sometimes it would be easier to say yes, he does have autism and not have to explain it all.
OMG completely agree! my son does not have autism but sometimes i find myself thinking it would be easier just to say "yes he's autistic" to curious and rude onlookers. its all i ever hear these days- obviously my child has developmental disabilities and is socially unaware and even has some sensory needs, but it is due to his seizure disorder and the medication he takes for it. it is frustrating to not have a more clear diagnosis and even more frustrating when people just assume he is out of control. like you, for lack of a better diagnosis i just say he has a rare form of epilepsy that affects every aspect of his daily living... this is true... but people still look at you like you are speaking russian- it would be much easier to say- "he is autistic". we need more awareness of autistic-like disorders. OR just acceptance and understanding of these children instead of the rude ignorance of the general population!
ReplyDeleteThis includes my family! Because my son is socially delayed and/or not interested, grandparents ask if he has autism. Autism has become popularized in the media and is so prevelant that most people know the signs and symptoms. Most have never heard of, and cannot pronounce, his static encephalopathy!
ReplyDeleteThis person says that "it is frustrating to not have a more clear diagnosis" then why is this person blogging and not calling their doctor and getting a more clear diagnosis? Yes, the child may have epilepsy and developmental delays, but then there may also be more. Be thankful that your family (including grandparents) are concerned. Acceptance would be a wonderful thing. Same as acceptance for little people, obese people, people of other races and religions and the list goes on and on. Your family is not being rude or ignorant, they are concerned. Be grateful for that. My children have grandparents that treat both of them differently. One gets a gift for their birthday and Christmas. The other child gets a card. That is rude and ignorant.
ReplyDeleteThe challenges of having an undiagnosed kid - a fertile topic for another blog post...
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