Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Parenting Special Needs

Blog #258~When Down Syndrome and Autism Intersect

Blog #258~When Down Syndrome and Autism Intersect

As Autism Acceptance Month winds down, I want to highlight a great new resource for families, medical professionals, clinicians, teachers and caregivers who are supporting an individual with a dual diagnosis of Down syndrome and autism. Did you know that research shows that about 16-18% of people with Down syndrome also have autism spectrum disorder (DS-ASD) (Autism Speaks: Richards et al., 2015). Navigating the DS-ASD journey is complex and challenging, I’ve been on this road with my son Nick, for 30 years. Thankfully, the top experts in the field have joined together to create this new resource that was just published: The second edition of When Down Syndrome and Autism Interesect: A Guide to DS-ASD for Parents and Professionals, by authors Margaret Froehlke, RN, BSN and Robin Sattell, MS.

Order here: https://a.co/d/fbIBv0z

UNLOCK THE WORLD OF DS-ASD

The first edition of When Down Syndrome and Autism Intersect was the first book to focus on the unique profile of a Down Syndrome-Autism Spectrum Disorder (DS-ASD) diagnosis. Now with this greatly expanded, updated second edition, it remains the only book for parents and professionals offering a comprehensive guide to supporting individuals with this complex dual diagnosis. Written by a large team of veteran parents and experts in the field, it covers every aspect of caring for children and adults with DS-ASD. Full of good will and respect for the DS-ASD community, this book offers sound information and resources steeped in research and clinical findings. It is also grounded in respect and concern for the parents’ need for specialized supports. Families will find a treasure trove of anecdotes and practical advice, discovering that they are not alone as they continue on their DS-ASD journey.

This new book is a game changer for the DS-ASD community. It compiles the most up-to-date, evidenced based research, best practices and strategies to support individuals with DS-ASD. I had the honor of being a contributor in chapter 10, “Understanding Communication, Behavior and Sensory Strategies”. When Down Syndrome and Autism Intersect is the essential guide to help understand, navigate and empathize this complex and often difficult journey. I look forward to sharing more about the contents of this book with you in future blogs.

That’s what is in my noggin this week.

~Teresa 🙂

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Posted in Autism, Behavior/ ABA, Down syndrome

Autism and Meltdowns

meltdown

Autism and Meltdowns

April is Autism Awareness Month.  This week I want to focus on autism and meltdowns.  Here is a not so pretty portrait of one of Nick’s meltdowns that I have deconstructed for you.  Nick at the time was 19 years old.  He has Down syndrome and autism.  This will give you an idea of the triggers and behaviors that can occur during a meltdown.  It will also show you what I learned to try and prevent this in the future.

Click here to read @ https://nickspecialneeds.wordpress.com/2013/12/09/blog-77autism-and-meltdowns/

That’s what is in my noggin this week.  Thank you for reading and sharing the reality of autism.

~Teresa

 

Posted in Autism, Down syndrome

Blog #108~ Seinfeld Thinks He Has Autism

Blog #108~ Seinfeld Thinks He Has Autism

So Jerry Seinfeld thinks he might be on the autism spectrum. This story aired last week:

In his sit-down with Brian Williams, Seinfeld said, “I think in a very drawn-out scale, I think I’m on the spectrum.” The comedian added, “You’re never paying attention to the right things. Basic social engagement is really a struggle. I’m very literal. When people talk to me and they use expressions, sometimes I don’t know what they’re saying,” Seinfeld said. “I don’t see it as dysfunctional, I just think of it as an alternate mindset.”

Jerry Seinfeld

Since this interview aired there has been an outpouring of criticism from the autism community.  Many parents who are in the trenches battling autism are up in arms, and with good reason.  They are dealing with their child having debilitating seizures, sleep deprivation, health issues and violent meltdowns. They face the reality that their child will never talk, drive, date, get a job, live on their own or get married. It diminishes what families go through and they find it insulting to their children’s diagnosis.  Countless families are fighting to get services and funding for to take care of their child.  Amongst all this, they are cleaning up poop smear accidents.

poop icon

Here is a statement from Wendy Fournier, President of the National Autism Association:

What frightens me with these kinds of statements and stories is that I don’t want people to think that autism isn’t a serious diagnosis, or that it’s not a struggle for individuals and their families. What many people don’t understand is that on that lower-functioning end of the spectrum, we have individuals who are suffering and whose lives are at risk.” “Autism is not a designer diagnosis,” Fournier added.

Let me throw in my two cents here. My son, Nick is 20 years old and has a dual diagnosis of Down syndrome and autism.  His speech is very limited; he will never drive a car, date or get married and live on his own.  He requires supervision 24/7.  Oh and yes, I’ve cleaned up my fair share of $h*t storm accidents.

The only thing that Nick and Jerry Seinfeld have in common is that they are both incredibly funny guys.

All Aboard Diner 4-23-10 006

I am a huge Seinfeld fan, and I’m not going to boycott his shows because he made these comments without a formal diagnosis. He has the right to how he feels and share his journey of self-discovery.  But, I disagree with Seinfeld saying, “I don’t see it as dysfunctional, I just think of it as an alternate mindset.” He is suggesting that it’s just a different way of thinking, rather than a disorder.  Well, autism is a disorder!

I fear that society and government policymakers will disregard the seriousness of autism spectrum disorder (ASD).  The media is so quick to shine a light on the positive stories of autism, especially when a celebrity is involved.  That’s great, I’m all for any media attention to raise awareness. I hope Jerry continues to use his celebrity status to help advocate for more funding and services towards autism.  But society needs to see the other side of the spectrum and what families deal with on the front lines of the combat zone.  Maybe next week, I’ll write about one of those bloody battles I’ve had with Nick.  That’s what is in my noggin this week.

~Teresa