When discussions about blogging for the Autism Society of North Carolina began, Maureen Morrell, friend and Director of Government and Community Relations, said, “We see so many families now with more than one child with autism. You have a unique perspective. Why don’t you write about it?”
Ten years ago, when the three boys were first diagnosed, I felt strange. I’d go to various autism support groups and cringe when the introduction circle came around to me. “Hi my name’s Alison I have three boys with autism ages…” Inevitably, the room would let out a gasp. I’d leave more worried than when I came and stopped attending for a while, unable to shake off feeling somehow excluded, and like a- well,…a freak.
Thankfully, I’m over feeling embarrassed. And before anyone gets upset, let me just add that I have never been embarrassed by my children. The negative feelings always came from how I felt I measured up as a mom. When you have three with special needs, you can’t do enough. Like most parents, I suspect, I tend to feel overly responsible for everything. Since then, I‘ve also met and heard of many more families impacted more than once by autism.
How many of the 50,000-plus families in North Carolina have more than one child with autism? How many of that 1% of our nation’s children (the ‘new’ rate of autism) are in families with multiple children with autism? The short answer: We don’t know. Anecdotally, we know we have more than we used to, but then again, we certainly have more children with autism than we used to. I began my quest to find these answers.
I started in North Carolina with TEACCH. It’s a bit busy over there (diagnosing more kids!) and they can’t give me numbers right now. Next, I emailed the North Carolina Department of Public Instruction, which led me to the people in charge of the epidemiology study at The University of North Carolina at Chapel Hill, the North Carolina Department of Health & Human Services, and Autism Speaks. I haven’t received any responses yet.
The Autism Society of America doesn’t think there is a number. However, Catherine, in the Information Department said she would recommend to her supervisor they start taking this data, at least with their incoming calls. Kudos to Catherine and ASA!
By Friday afternoon, with no hard, cold facts, I’m like a dog with a bone and getting concerned that few are thinking about families like mine. A spotlight is needed on this number. Autism is expensive and families are going belly-up financially, emotionally, and physically. If there is a true increase within families, this also affects agencies and organizations and impacts how supports and services are delivered.
We can’t all be saved by “Extreme Home Makeover”. Is it our last resort to be featured on the Discovery Channel in order to tell the world we have an autism problem? Individuals and families need supports and services in spite of budget cuts. People with autism need housing and employment as they age out of school. Just because Oprah doesn’t say it, doesn’t mean it’s not real. And, as I would later confirm, just because the CDC doesn’t highlight it, it doesn’t mean families like mine don’t have some serious issues. Note to self: Does anybody really care?
Dr. Andrew Wakefield cares. After graciously replying that their database at Thoughtful House contains the very information I seek, he added that he would have their IT guy look into what percentage of their patients are members of families with more than one child with autism. This looks promising…I’ll keep you posted.
I was told by friends there are all kinds of genetic and behavioral research done on families with more than one child with autism. (Genetic studies have done bupkes for my family.) Google “multiplex autism in families”. This gave me pause. I didn’t know there’s a name for families like us.
We’re a Multiplex Autism family, like a movie theatre.
The Centers for Disease Control and Prevention do this kind of counting thing all day long. Coffee consumption levels in Atlanta have got to be high. The CDC should know what percentage of children with autism are in (multiplex!) autism families. I phoned and was connected to a real person who efficiently took down all my vital stats, asked when I needed the information, and responded that someone will contact me by email. Here’s what I got. Notice how I’m succinctly summed up as a Media-Inquiring Normal Blogger. Love the “Normal”. This is the CDC; pay attention, folks:
Subject: FW: MI-Normal-Blogger-Tracking families w/ 1+ autistic childre
Date: Fri, 6 Nov 2009 14:22:45 -0500
From: Amanda (CDC/CCHIS/NCHM)
To: Alison Davis
The CDC does not currently have any studies looking at families with more than one child with autism. However, this is definitely a subject of interest and I know quite a few papers have been published on this topic. You may want to do an online search to see if you can find further information.
I hope this helps!
Questions for CDC: Alison is working on a blog for the Autism Society of North Carolina and in her particular state, they are seeing an increase in families that have more than one autistic child. She would like to know if CDC tracks families that have more than on child with autism.
Information Provided by CDC:
View Inquiry Details
From: Alison Davis
Sent: Friday, November 06, 2009 2:41 PM
To: Amanda (CDC/CCHIS/NCHM)
Subject: RE: MI-Normal-Blogger-Tracking families w/ 1+ autistic childre
Thanks, Amanda, for your quick reply. I’m not looking for genetic studies at this time; I was just hoping for numbers.
RE: MI-Normal-Blogger-Tracking families w/ 1+ autistic childre
Sent: Fri 11/06/09 2:45 PM
I see, you want to know how many families have more than one child with autism? I don’t think I have ever seen that information or a study done particularly on that topic.
So there you have it. The freaky thing is, I know you families are out there because I know I’m here. If you have three or more children with autism, there’s a support group run by my friend Michele Iallonardi. Autismx3ormore@yahoogroups.com has almost 40 members across the country and Canada. As you can imagine, it’s not very active. Most parents of three or more children with autism are covered up. But if a member posts a call for ideas or help, we jump right in and hold you up. Count on it.