Blog #70~When Down Syndrome and Autism Intersect
I just finished reading the Woodbine House book, When Down Syndrome and Autism Intersect, A Guide to DS-ASD for Parents and Professionals. As always, Woodbine House delivers the goods. I only wish this book had been available fifteen years ago when I began to suspect that Nick had something more going on than just Down syndrome.
I started to notice little things at first. Around the age of five Nick started to bang objects and exhibit other odd behaviors. After doing some internet research I stumbled upon a sensory processing disorder checklist. Nick met many of the criteria which led me to believe this was the reason for those behaviors. When we attended the local Down syndrome support group functions I also felt that he didn’t speak as well as his peers.
Nick is more interested in his hand flapping than Santa 🙂
So, I went to have an evaluation done to see if he might have autism. The results of this indicated that Nick did not have autism as he was highly social and his language deficits were a result of having verbal apraxia of speech. For more information on verbal apraxia of speech I would suggest reading this Woodbine House book, Speaking of Apraxia A Parent’s Guide to Childhood Apraxia of Speech:
Six years passed and as puberty was full on, Nick’s behavior and meltdowns became more violent and dangerous. The staff at his school struggled along as well. It was nagging at me. I brought up my concerns and the need for an evaluation for autism. The staff informed me that this was not necessary as there was already a primary evaluation of Down syndrome. We decided to have an independent evaluation done at Little Friends Center for Autism, http://www.littlefriendsinc.org. Getting the official diagnosis of autism confirmed my suspicions and gave me a sense of relief and validation. Most importantly, the formal diagnosis allowed for getting the services of the school district’s autism specialist. This specialist helped to identify what triggers set off meltdowns and was able to put a behavior plan in place along with a better picture communication system with proper training for the staff and myself.
Nick age 12, proudly stands on the podium winning the state gold medal in the softball throw at the Special Olympics…
According to the Kennedy Krieger Institute, http:// www.kennedykrieger.org, around 10-15 percent of children with Down syndrome also have autism.
For an autism diagnosis there are three areas of development that a person must show significant difficulties:
1. Social Functioning
2. Non-verbal or difficulties with communication
3. Restricted interests and activities
Some of the symptoms and behavior shown with children having Down syndrome and autism are:
*Significant lack of social response
*Difficulties with communication and reported loss of verbal and expressive language.
*Repetitive behaviors like hand flapping, spinning or rocking, fixation on inanimate objects (strings, fans, mirrors, water, etc..)
*Sensory issues including the intensified sensitivity or need for more sensory input
*Behavioral challenges including frequent tantrums and physical violence
The book, When Down Syndrome and Autism Intersect contains a great deal of information on health issues and gives practical information on tackling the complex world of raising a child with Down syndrome and autism. My best advice is this, if you suspect that a child with Down syndrome has something else going on then run; don’t walk to get a firm diagnosis. There are more services that become available to help with challenging behaviors, communication and learning for our kids. That’s what is in my noggin this week! 🙂
~Teresa
Down Syndrome with a Slice of Autism 
Way to describe opening that “box”! Well written!
Yes, you know those boxes as well. 😉
Great article! Very helpful! I met the editor of Missouri Autism Report. She gave me several comp copies. I will send them along to u at some point.
It is very well done.
Love! Great photo of Nick on Santa’s lap. It’s almost as if he’s saying, “Oh, sh*7! I totally forgot my list. What should I say now?!”
Thanks yes he gets lost in the hand flap and then some.:)
Funny, I wonder what would be on Nick’s list? Fire alarms, trucks, Taco Bell, Little Debbies, Sprites to name a few things. Thanks for reading Leslie! 🙂
Thanks for sharing the blog and the critique!
I just found your blog. Thank you, thank you and thank you. I thought I was going through this alone. I have not met many parents who have children with the dual diagnosis of DS & autism. I am struggling with potty-training with my 11 yr. old son. Sometimes I think I care more about him going on the toilet then he does. Any whoo, glad I found you and will continue to follow you.
So glad you did!😄
Awesome and yes that’s why I started writing, because I felt alone and didn’t want others to feel that way. Check the archives under “Category Toilet Training” for some of what I’ve written. For the record, it does seem to take forever. It’s a lot of work doing the data tracking (putting them on the toilet every hour, dry pants check, keeping data of food and liquids going in and how long it took to come out the other side) for one full weekend. But I did see a pattern emerge and was able to first get Nick “habit trained” on a timed schedule around age 11. It took another year or so until he got on board and seemed to care (like a light switch flipped) and he was able to do this independently and get into underwear 24/7. Oh what a glorious day. I think the toilet training is more about disciplining myself to be consistent and Nick becoming mature. Good luck and keep me posted!
I’m a caregiver in a adult care complex. I was trying to find someplace that explained my residents behaviors (she gets violent during incontenate care) and this really looks like the best resource I’ve found to understanding the way she’s processing things. THANK YOU SO MUCH FOR SHARING YOUR EXPERIENCE! I don’t think you’ll ever know how much you’ve helped me in my pursuit of providing exceptional care. (P.s. most rewarding job ever.)
Glad to hear the information was helpful in your line of work. There may be more blogs in the archives. Check under the “Category” under “Behavior”. Please let me know if there are any other topics that might be of benefit. I applaud your work and zest for what you do! 🙂