ASAN recently released a statement, ending its partnership with Sesame Street. Why? According to their statement:
Its latest PSAs featuring Julia promote Autism Speaks’ “Screen for Autism” initiative and their resource for parents of newly-diagnosed autistic children, the 100 Day Kit. Like much of Autism Speaks’ recent advertising, these PSAs use the language of acceptance and understanding to push resources that further stigma and treat autistic people as burdens on our families. The 100 Day Kit encourages parents to blame family difficulties on their autistic child (“When you find yourself arguing with your spouse… be careful not to get mad at each other when it really is the autism that has you so upset and angry”) and to view autism as a terrible disease from which their child can “get better.” It recommends compliance-based “therapies” and pseudoscientific “autism diets,” but fails to educate families about communication supports. It even instructs parents to go through the five stages of grief after learning that their child is autistic, as they would if the child had died.
Now, I took a look at that 100 Day Kit and the part where it supposedly “encourages parents to blame family difficulties on their autistic child”:
Try to direct your anger towards the disorder and not towards your loved ones. 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. 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. Everyone in your family needs support and to be happy despite the circumstances.
As you can see, nowhere does it actually say to blame the child. Notice that it says “when it is really the autism” and not “when it is really your autistic child”. So how is it that the toolkit is encouraging parents to blame family difficulties on their autistic child? The only way it does that is if the reader did not comprehend the passage or if they think that autism is inseparable from the person; that autism is an identity.
ASAN also states that the toolkit encourages parents to “view autism as a terrible disease”. However, the only mention of disease in the toolkit is when it mentions celiac disease, the U.S. Centers for Disease Control and Prevention (CDC) and when describing psychologists as a “professional who diagnoses and treats diseases of the brain, emotional disturbance and behavior problems”. The only people who are alluding to autism as a disease are ASAN themselves.
According to ASAN, the toolkit recommends pseudoscientific “autism diets”. However, the toolkit only mentions one diet, the Gluten free, casein free diet (GFCF), and only if the autistic person is affected by gluten or casein in the first place.
Much has been said about the gluten free, casein free (GFCF) diet and its use to help individuals with autism. Many families with children newly diagnosed with autism wonder if it’s something their child should follow. The GFCF diet was first developed for people with celiac disease, a disorder that involves a severe reaction to gluten in the diet. Gluten is found in wheat products such as bread and other bakery goods but also in a wide variety of other food products. Casein is a protein most associated with dairy products and has potential to cause severe reactions in certain individuals. When used appropriately, the GFCF diet is safe and can help avoid these severe health problems.
The theory behind its use in autism is that if a person is having GI responses 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. 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. That said, while the GFCF diet has been used in the autism community for a couple of decades, there is minimal evidence that it improves autism-related behaviors.
Families choosing a trial of dietary restriction should make sure their child is receiving adequate nutrition by consulting his or her pediatrician or a nutrition specialist. Dairy products are the most common source of calcium and Vitamin D for young children in the United States. Many young children depend on dairy products for a balanced, regular protein intake. Alternative sources of these nutrients require the substitution of other food and beverage products, with attention given to the nutritional content. Substitution of gluten-free products requires attention to the overall fiber and vitamin content of a child’s diet. Vitamin supplements may have both benefits and side effects. Consultation with a dietician or physician is recommended for the healthy application of a GFCF diet. This may be especially true for children who are picky eaters.
About the five stages of grief, here is some context from the toolkit:
You are never prepared for a diagnosis of autism. It is likely that you will experience a range of emotions. It is painful to love so much, to want something so much and not quite get it. You want your child to get better so badly that you may feel some of the stages commonly associated with grieving. You may “revisit” these feelings from time to time in the future. Part of moving forward is dealing with your own needs and emotions along the way
Notice that it says that “you may feel” and not “you must feel”. Telling parents of feelings that they may feel is a far cry from instructing them to feel things, as stated by ASAN.
As mentioned in my other blog posts, there is an ASAN tradition to put out a flyer mischaracterising Autism Speak’s financials every Autism Awareness Month. So it is a fact that ASAN do not like Autism Speaks very much. But here they are now with what seems to be a complete failure to understand English.