LeFreak?

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

Hi Alison,

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!

Amanda

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.

Alison

RE: MI-Normal-Blogger-Tracking families w/ 1+ autistic childre‏

From:            Amanda

Sent:            Fri 11/06/09 2:45 PM

To:            Alison

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.

Sorry!

Amanda

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.

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20 Responses

  1. Alison, all I can say is that you and other “multiplex” parents are saints in my book. The persistence and patience required to care and advocate for your children must be superhuman. I’m glad to hear you have the on-line network for 3 + families…if you expand that to 2+ families (what about those with just one child with autism?) I bet there would be many grateful partakers out there. Bless you for taking the Augustine Project training course; I hope you find it useful with your boys.

  2. Thanks, Debbie! I think that many kids with autism can make use of the Augustine Literacy Project. My eldest son had undetected dyslexia for years. Schools always said, “That’s just developmental delay.” When a child gets to high school and he’s smart, it gets pretty funky if you can’t read or write well! He is already improving; it’s very exciting,

  3. “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?”

    You said a mouthful!!!! There is a ground-swelling of self-help advocates that should be making their way into places of power forcing government action in favor of our kids. It’s time to join up and make that our priority. It’s ours if we want to go out and take it.

    Great start to what I hope will be frequent posts we can all enjoy and comment on.

  4. Alison
    I am still recovering from the shock of last week………..we were told our daughter exhibits many signs and symptoms of autism. I am beyond angry, mad, and even devastated because our boys (7 and 9) also have autism. I am just know beginning to come out of my fog and function again. While I know this does not change anything about who she is I know that the trials and struggles she will face, along with her brothers are vast. I am glad to know there are other parents who have faced the DX x 3. It does not matter if you are hearing the DX for the first or third time…….it never gets easier.

    • When my three boys first got diagnosed within a thirteen-month period, It took much longer than a week to get over the shock. I mean, when ‘they’ said “Autism.”, I said, “What is it?”. I got support from people who were able to give it (not always family members!) and I allowed myself grieving time. I learned how to ask for help. I learned how to help my children. I’m still learning! And there are days when I need to take an “autism break”. I think that’s healthy. We are holding you up “Just like birds of a feather”; you are not alone. Thank you so much for commenting, Elizabeth.

  5. Nice job Alison! Nicely written, nice research. From my perspective, you are a great mom, and I admire you for that! And you have really great kids!
    Kelly

  6. Hey Al !! My heart goes out to you and your family!! The heck with politics I should jump on and help you !! What a force we could be in Washington!! You know we would be!!! Let me know when your next visit to WashingtonDC !! Maybe I will show up and help you in the fight against autism!! I would love to see you again!! Take care !! Enjoyed the music!! Love, Patty

    • Hey Patty! Anywhere you are is a force to reckon with! There is much work to do with too few chiefs and fewer indians. Welcome.

  7. Alison – you are our hero – remember you were raised and trained to do this work !!!!
    we love you

    Alison’s sister

    • ??? I was raised, but I don’t think anyone’s ever prepared! If you mean, how we were taught tolerance, then yeah! We’ll talk about this later on the phone!

  8. Alison,
    It is so great to read your perspective, knowing that as you talk the talk you also walk the walk. Having watched you come through every step of the autism journey, I am so encouraged by your stamina and faithfulness. Your boys are truly blessed with the greatest parents that they could ever have! I am thankful that I have been able to get to know you and your wonderful family!
    Donna

  9. I had 5 with autism, one I adopted after successfully recovering mine. So, I had four, all different. One regressed, two stopped developing and one born with all symptoms. I adopted my girl at age 4. I know she had symptoms at 1 1/2 years, but that is all I know of her onset. All recovered on the same treatment, since autism is from pathogens and toxins; one just needs to rid them. Of course, it does take a while.

    • Heidi, that’s big news! Congratulations to you and your family. Does no child have the formal diagnosis anymore? How long did treatment(s) take and how could you afford it (sorry, don’t mean to get too personal), because I know many families with multiples are already in so much debt from autism, without even beginning biomedical interventions…

      I realize this is a controversial topic, but I have seen improvements over time with my own sons. I also realize, that not all children may recover.

  10. Alison, I applaud you and anyone who has more than one child blessed (don’t shoot me) with autism. I have enough issues dealing with my one. You summed up what I have been saying and feeling for a long time- “Note to self- does anyone really care?” You are an awesome mom and advocate and have taken autism by the tail. Everyone can’t be forerunners in this fight but we all can and do have a voice. We truly are (or should be) in this together.
    Pat

    • Pat, I would never shoot you! Children are blessings. I agree with you that we should be in this together. And you have a great voice.

  11. Alison,
    Thanks for sending your blog to me. As you may remember, my interest is along the lines of special foods ,alergies,natural cheleation (cilantro and chorella) and homeopathic support.
    Chelation cleared the OCD in my son. I hope what folks use to support the clearing and hopefully healing* will be mentioned in this form of communication. Bless each and every one of you parents and your children also. Nora G

  12. I’m 2 for 2, both of my children have autism. The oldest is close to what many would call recovered now, but the youngest continues to struggle and is non-verbal.

    My oldest has responded to just about everything we have done with him, my youngest has series of improvements and regressions.

    Never a dull moment here.

  13. Alison!

    From one freak to another (minus 2 kids though), I am so thankful that you are one of my lifeline options. It was about 3 years ago that we got to meet face-to-face and I have always wanted to find out more about how you manage life, your children and their needs. Thank you so much for sharing this story. I can’t wait to read more of your posts.

    Thanks for the encouragement!

    Cathy

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