Thread by @AlexKronstein

1/ CN/TW: Autism Speaks, comparing autism to cancer and death, ABA, quack diets, blaming autistic children for family troubles, all manner of ableism

So Autism Speaks has this thing called the "100 Day Kit".

Want to know what's in it? Here are some excerpts.

2/ On page 10:

"Autism statistics from the U.S. Centers for Disease Control and Prevention (CDC) released in March 2014 identify around 1 in 68 American children as on the autism spectrum – a ten-fold increase in prevalence in 40 years. ....

3/ "Careful research shows that this increase is only partly explained by improved diagnosis and awareness. Studies also show that autism is four to five times more common among boys than girls."

4/ On page 12:

"Many people with autism have similar difficulty seeing things from another person’s perspective. Most five-year-olds understand that other people have different thoughts, feelings and goals than they have. A person with autism may lack such understanding."

5/ On page 20, under the section "You, Your Family and Autism" they actually talk about how parents of an autistic child go through the "five stages of grief" when their children are diagnosed.

As if the child has DIED.

I shit you not.

6/ Oh and as if that's not enough, in that very same section, we get THIS:

“I felt angry when a child at my son’s school was diagnosed with Leukemia around the time our son was diagnosed with autism. Everyone sent cards and cooked dinners for them......."

7/ ".....Everyone sent cards and cooked dinners for them. They didn’t know I needed that kind of help too. When I let people know I needed help they came through for me.”

VOMIT!!!

One other thing.....the "five stages of grief" concept has long been discredited in any context.

8/ Of course, the kit also recommends ABA and all its derivatives, including Verbal Behavior therapy, Pivotal Response Treatment (PRT), and the Early Start Denver Model (ESDM).

9/ It also describes DIR/Floortime as done in conjunction with ABA (Floortime is kinda iffy but that's another story altogether).

It even describes SCERTS as developed from ABA.....but it wasn't. And it also references Relationship Development Intervention (RDI) and TEACCH.

10/ And on page 54.....

"We do know that many children get better with intensive behavioral therapy."

11/ What's that? It recommends quack diets?

Why yes indeed.....on page 53, the GFCF diet.

And it says......

12/ "The theory behind its use in autism is that if a person is having GI response to these products, the resulting inflammation may damage the lining of the intestine and as a result lead to absorption of molecules that are not normally absorbed by healthy intestines......"

13/ "......Some evidence suggests that these molecules or the inflammation they cause can interact with the brain in ways that cause problems such as anxiety, mood abnormalities, mental difficulties and perhaps worsen the behavioral symptoms of autism."

14/ For communication supports, there is no meaningful discussion about AAC. They talk about PECS, but that's it.

15/ On page 69, under "Ideas for Purposeful Play" they have some TERRIBLE advice.

Requesting
--Utilize motivating items (i.e. bubbles, juice, trains) to address requesting/communication
--Swing: wait to push until child makes the request

...............

16/ .................

--Door: wait to open until child makes a request
--Lunch/Snack: withhold until child makes request

17/ On page 29, there's the "5 Tips for Parents", which says, among other things:

"Try to direct your anger towards the disorder and not towards your loved ones........"

18/ ".......When you find yourself arguing with your spouse over an autism-related issue, try to remember that this topic is painful for both of you; and be careful not to get mad at each other when it really is the autism that has you so upset and angry......."

19/ "......Try to have some semblance of an adult life. Be careful to not let autism consume every waking hour of your life. Spend quality time with your typically developing children and your spouse and refrain from constantly talking about autism......"

20/ "......Everyone in your family needs support and to be happy despite the circumstances."

And this was recommended by family therapist Kathryn Smerling.

On page 27......

"Autism doesn’t affect only one child. It affects the entire family."

21/ Oh yeah.....I almost forgot....on page 7.....

"It is important to remember that your child is the same unique, lovable, wonderful person he or she was before the diagnosis."

I dare you to read that and not fall off your chair laughing!

22/ So, for those of you who are still supporting Autism Speaks, whether you're an allistic parent, allistic professional, NT-run autism nonprofit, or even an #actuallyautistic person, I ask you......

Do you STILL want to support this org? Or its Canadian counterpart?