Posted by: Ticktock | September 21, 2010

Diagnosed With Autism – Now What?

Your child has been diagnosed with autism, and you’re scouring the internet looking for reliable evidence-based information. You come here and there’s nothing but endless talk about whether vaccines are the cause of autism, but there’s no practical advice. There’s a very good reason for that… this blog is not the resource you’re looking for. We are science advocates who are doing our best to correct misinformation using skepticism and critical thinking, but we’re not scientists and we have no business offering medical advice.

But, we can point you in the right direction. I recently asked my mother to help me redirect my readers toward resources that are reliable and evidence-based. My mother is an administrator for an Early Intervention program at a hospital on an army base. She’s more than qualified to offer advice on the subject, and since she reads this blog (thanks Mom), I will encourage her to answer any follow up questions.

One thing I know that my mother would want me to mention is that Early Childhood Intervention is a service provided by every state to all developmentally challenged children under the age of three. Check here for more information about Early Intervention in your state.

Anyway, if you’re looking for evidence-based information about autism, you should turn your browser toward these sites: The National Professional Development Center on Autism Spectrum Disorders and Autism Internet Modules. I hope those resources are helpful, but please let me know in the comments section if there are other resources that you recommend.

The journey of a parent with an autistic child is something that I can’t fathom, except that I know that it’s more than challenging, extremely frustrating, and that life for these parents can be chaotic and unpredictable. Jenny McCarthy might say that modern medicine offers nothing but hopelessness, but she’s wrong. There are experts such as my mother, who are working hard with evidence-based approaches to help autistic children thrive in spite of their setbacks. Seek out those who respect science, and reject those who don’t.

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Responses

  1. Recommended books:
    Unstrange Minds by R.R. Grinker
    Not Even Wrong by Paul Collins
    The Science and Fiction of Autism by Laura Schreibman

    A set of good blogs:
    http://autism-hub.com/

  2. The Thinking Person’s Guide to Autism:

    The Thinking Person’s Guide to Autism (TPGA) is the book and website we wish had been available when our loved ones with autism were first diagnosed.

    Autism misinformation clouds and is perpetuated by the Internet. We want to make accurate information about autism causation and therapies visible, accessible, and centralized.

    We also want to help new autism community members develop a positive yet realistic attitude, to appreciate the strengths while supporting the struggles of our loved ones with autism.

    Here’s a list of the posts to date specifically addressed to families with a brand-new diagnosis:

    Squillo What Now? 10 Tips for Families with a New Autism Diagnosis
    Susan Walton Getting to Know Your New Neighborhood: Reaching Out and Building a Network
    Michelle Hecht MA, BCBA What is Applied Behavior Analysis, and Why You Want a Behavior Analyst On Your Child’s Team
    Barbara H. Boucher OT, PhD, PT What to Ask of an Occupational Therapist
    Jordan S. Sadler MS, CCC-SLP What A Great Speech Language Pathologist Can Do For You

    Kristina Chew Choosing a School for Children on the Autism Spectrum
    Kristina Chew Special Ed 101
    Prather Harrell On the Verge of a Meltdown
    Shannon des Roches Rosa Does Your Child With Autism Have a Daily Record?

  3. Oh I forgot the disclosure: I’m an editor for The Thinking Person’s Guide to Autism.

  4. Asperger Syndrome and Long-Term Relationships

    I read this book since, while I don’t have AS, I have a lot of similar social behaviors and personal quirks associated with my ADHD and depression. It was really helpful for me and helped my husband understand a lot of how I function. While it is targeted toward romantic relationships among adults, much of the information is pretty generalizable.

  5. There’s little doubt that parents need help navigating all the info out there when they get a diagnosis. You really have to read all you can get your hands on, think about your own child, and move forward from there. My daughter has SPD (often co-morbid with autism) and here are some sites that helped us:
    Brain Balance – education, learning center
    SPD Foundation – support and info for autism and spd

    • The Brain Balance web site claims that most childhood disorders stem from one underlying condition, which made me suspicious that it was disguised chiropractic. Then I read the founder’s bio that he’s chiropractic neurologist. That’s not the type of franchise we support here.

    • Harriet Hall just wrote unfavorably about the Brain Balance site on Science Based Medicine.

      http://www.sciencebasedmedicine.org/?p=6736

  6. I can personally highly recommend Early Intervention programs. Just the moral support we received from our wonderful developmental specialist, with whom we are still friends six years later, was invaluable and helped us keep our sanity. The information about evidence-based methods along with hands-on training that she provided each week to allow us to give our preemie triplets a leg up in reaching goals was terrific. I give our state program credit for how well our children are doing now that they’re nine years old.

    • Two things I truly valued:

      1) The monthly parent meetings that the special ed. preschool program provided to give us information and let us know what services were available.

      2) The pre-treatment kid/parent camp run by the (now called) Rite Care therapists required before our children could get free or reduced rate speech therapy (back then it was the Scottish Rite Center for Childhood Language Disorders). They had university students studying speech therapy work with our children, while the caregivers (and my mother-in-law also attended) learned how to work with our children.

      Oh, and the fact my son did not even attempt to try speech until he started in his special ed. preschool. He knew he was already different while playing with “normal” children. His normal communication style was just a smile (he already learned that they did not know sign language). He only tried when he knew he was not the only one… and learned many more skills at Rite Care.

  7. Politicians don’t understand that autism is perhaps the most overdiagnosed and misused label/condition in USA now. Thomas Sowell the great African American writer, agreed. So did Detroit expert Dr. Colleen Allen from Henry Ford Autism Center. And so do many other experts agree autism is overdiagnosed. Look at you tube video “face of autism” This kid is not autistic. As are many kids featured on youtube with their mummies saying they are autistic. Autism label is being hijacked and abused for profit. Jenny MCcarthy’s camp is a great example of a person and publishers running with the autism label to make a quick buck, when the kid wasn’t truly autistic. Then you can google “amanda baggs controversy” to see an even more pathetic spectacle of the ever expanding autism spectrum. Way to go Dr. Gupta on CNN. Nice research. Way to recognize genuine autism.
    It’s important to understand what REAL genuine autism is, so we’re not wasting money funding fake programs who are studying fake autistic subjects to make their study look better and generate more funds. You tube has some good AUTHENTIC real, genuine autism videos under “severe autism” that help parents who are struggling with severe issues like self injury, seizures non verbal communication. They will also show people real autism instead of the fake faces of autism seen way too often today in what has become an epidemic of misdiagnosis fueled by groupthink hysteria and greed.

    • I hated Thomas Sowell, especially when his editorials cut from the local newspaper were being shoved in my face as I was trying to get services from my two year old without any real speech. He is an economist, not a medical professional… and his son did get speech/language therapy.

      When there was a website set up by Camarata on “Einstein like” late talking children in association with Sowell, I sent them a question about kids with disordered and no speech like my son. I got absolutely no reply.

      I was not alone in my opinion.

      Your attempt to denigrate another person by telling us to look up a name speaks more about you than her. You should be ashamed of yourself.


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