A Look at Autism Speaks’ “100 Day Kit”

Image description: Cover of Autism Speaks’ “100 Day Kit,” which serves as a “guide” for families following the first 100 days after their child is diagnosed with autism. The book contains pathologizing and harmful language about autism including comparing autism to cancer and death, recommending quack diets as autism “treatments,” and blames stress on autistic children. 

The Autistic Self Advocacy Network (ASAN) has recently cut ties with Sesame Street due to their partnership with Autism Speaks and Ad Council to promote early screenings of autism. They used Julia, an autistic muppet on Sesame Street that was created with input from ASAN, to promote Autism Speaks and encourage families to get an early screening of autism. Part of the early screening process was a link to Autism Speaks’ 100 Day Kit, which the Autistic Self Advocacy Network said, “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.’”

So, what is the “100 Day Kit” anyway, and how does it harm autistic people as ASAN describes it does? On its website, Autism Speaks has offered the “100 Day Kit” for families who have children recently diagnosed with autism. There is a version for children four and under called the “100 Day Kit for Young Children,” and another version for school aged children who were just diagnosed with autism called the “100 Day Kit for School Age Children.” They offer the guide for free as an incentive for early screenings of autism through their Autism Response Team, and offer it for purchase after six months have passed since a child has received an autism diagnosis. 

Having a guide to help families know what to do after they find out that their child is autistic is a resource that many families would love to have, and my family certainly would have loved one after I was diagnosed. However, the “advice” that Autism Speaks gives families is harmful to autistic children and stigmatizes autistic people. After reading the 100 Day Kit myself, I listed some of the most glaring issues with the guide, and I will as an autistic person myself, give some alternative resources and advice for families with a recently diagnosed autistic child.

  • Spreading myths that autism is “on the rise” and that autism is “more common in boys”

Page 4 of the 100 Day Kit states that, “Autism statistics from the U.S. Centers for Disease Control and Prevention (CDC) released in April 2018 identify around 1 in 59 children as on the autism spectrum – a more than ten-fold increase in prevalence in 40 years. Studies show that autism is four times more common among boys than girls.” There are two problems with this statement. The first is presenting the rise of diagnoses of autism as an increased “prevalence” of autism. Correlation does not equal causation. More people are not suddenly becoming autistic, but more autistic people are receiving an autism diagnosis due to an increased knowledge of autism and autistic characteristics and behaviors.

The second error of this statement that Autism Speaks makes is by saying that autism is four times more common among boys than girls. This statement should be corrected to, “Boys are four times more likely to receive an autism diagnosis than girls.” Many girls and nonbinary people go undiagnosed because they present autism differently than boys and there is a male bias in diagnosing autism. They are more likely to socially mask, or camouflage their autistic behaviors such as stimming or echolalia. They are more likely to be misdiagnosed or dismissed when evaluated for autism because they don’t “look autistic,” or meet the standard male biased diagnostic criteria for autism.

  • Encouraging parents to grieve over their autistic child

On page fourteen, the 100 Day Kit encourages parents to grieve over their autistic child, as if they were mourning the “loss” of their child who they expected to be neurotypical. Autism Speaks encourages families to go through the five stages of grief, or denial, anger, bargaining, sadness, and acceptance. Autism Speaks also treats autism as a disease by saying that families want their child to “get better” “from autism: “You want your child to get better so badly that you may feel some of the stages commonly associated with grieving” (14).

  • Blaming anger on autism, encouraging parents to be angry about autism

Autism Speaks also encourages parents to express anger over the fact that their child was diagnosed with autism, and to be “outraged” that their child is autistic. “Expressing your anger releases tension. It is an attempt to tell the people around you that you hurt and are outraged that this diagnosis has happened to your child” (15).

In the “five tips for parents” section of the Autism Speaks 100 Day Kit for School Age Children, Autism Speaks also tells parents to direct their anger not at each other, but at the “disorder” of autism: “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” (23).

  • Parent testimony equivilating autism to cancer

In a parent testimony below the anger section on the “five stages of grief” section of the 100 Day Autism Kit, a parent compares autism to leukemia and wishes that they got the same sorrow and sympathy for themselves for having an autistic child that another parent did for having a child diagnosed with leukemia: “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. They didn’t know I needed that kind of help too. When I let people know I needed help, they came through for me” (15).

  • Discouraging autism acceptance

When Autism Speaks talks about acceptance, they tell families to accept their child, but not their child’s autism: “Ultimately, you may feel a sense of acceptance. It’s helpful to distinguish between accepting that your child has been diagnosed with autism and accepting autism” (15). Autism acceptance is central to autistic advocacy, and not accepting autism means also not accepting autistic people as well. It is impossible to, as Autism Speaks says, accept that autistic children have been diagnosed with autism without also accepting autism and all the strengths and challenges that come with it.

  • Excluding autistic people from its description of the “autism community”

Autism Speaks does encourage advocacy and involvement in the “autism community,” but by “autism community,” they mean other parents and family members who have children or relatives diagnosed with autism rather than autistic people themselves: “Get involved with the autism community. Don’t underestimate the power of “community.” You may be the captain of your team, but you can’t do everything yourself. Make friends with other parents who have children with autism. By meeting other parents you will have the support of families who understand your day to day challenges. Getting involved with autism advocacy is empowering and productive. You will be doing something for yourself as well as your child by being proactive” (23).

  • Telling neurotypical siblings that its “okay to be sad to have a brother or sister affected by autism”

In its five tips for siblings section, Autism Speaks says that it is “okay” to be sad that their brother or sister is autistic: “While it is okay to be sad that you have a brother or sister affected by autism, it doesn’t help to be upset and angry for extended periods of time. Your anger doesn’t change the situation; it only makes you unhappier. Remember your Mom and Dad may have those feelings, too” (24). Siblings can and should be sad about the way that society, or institutions like Autism Speaks treats autistic people, but they shouldn’t be told to be sad about their brother or sister being autistic or “different.”

  • Encouraging parents and siblings to spend time away from autistic family member

In the five tips for siblings section of the Autism Speaks 100 Day Kit, it encourages parents to spend time with their neurotypical children away from their autistic children: “Plan more sibling time. Your typically-developing children will no doubt be richer for having a sibling with autism. But maintaining as much normalcy as possible will help them reach their potential too” (64).

It also tells siblings of autistic people to spend time away from them: “Spend time with your parents alone. Doing things together as a family with and without your brother or sister strengthens your family bond. It’s okay for you to want alone time. Having a family member with autism can often be very time-consuming and attention-grabbing. You need to feel important too” (24).

  • Glorifying people who have harmed the autistic community

The 100 Day Kit also praises people who have abused autistic people, such as Bernard Rimland, who founded “Defeat Autism Now” as well as the Autism Society of America and promoted the now discredited “extreme male brain theory” of autism which falsely linked testosterone to autism: “Dr. Bernard Rimland, the father of a son with autism who later founded the Autism Society of America and the Autism Research Institute, helped the medical community understand that autism is a biological disorder and is not caused by cold parents” (4). It also promotes B.F. Skinner, a pioneer of the most harmful and controversial early intervention used for autism, Applied Behavioral Analysis: “Verbal Behavior therapy teaches communication using the principles of Applied Behavior Analysis and the theories of behaviorist B.F. Skinner” (36).

  • Recommending harmful early interventions such as ABA

Autism Speaks also endorses abusive therapies such as Applied Behavioral Analysis (ABA), Verbal Behavioral therapy, Pivotal Response Treatment, and the Early Start Denver Model that all use ABA strict compliance tactics. It says on page 54 that, “We do know that many children get better with intensive behavioral therapy.” Autism is not a “disease” that people “get better” from. A 2018 study proved a link between ABA and PTSD. Autistic people who underwent ABA were 86% more likely to develop PTSD, the risk being 41% in adults and 130% in children than autistic people who were not put in ABA. Autism Speaks of course endorses ABA, because it continues to lobby for it to be covered by insurance companies.

  • Telling parents to ignore their autistic children until they make specific requests

Autism Speaks also encourages ABA tactics, such as planned ignoring. On page 63 under its suggestions for “purposeful play,” Autism Speaks lists suggestions such as using “motivating items” such as bubbles, juice, trains as rewards or incentives to address requesting/communication. It also tells parents to ignore their autistic children’s requests unless they make specific requests, such as waiting to push a swing, open a door, and even withholding food such as lunch or snack until their autistic child makes the specific prompt or request for these.

  • Recommending quack diets to “improve behavioral symptoms of autism”

Autism Speaks recommends the gluten free casein free diet to help “improve” autistic characteristics which Autism Speaks calls “behavioral symptoms of autism:” “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. 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” (53).

  • Falsely claiming that autistic people can “recover from autism”

Autism Speaks falsely claims that autistic people can “recover” from autism: “Is recovery possible? You may have heard about children who have recovered from autism. Although relatively rare, it is estimated that approximately 10% of children lose their diagnosis of autism” (48). Autism is not an illness or a disease that can be “recovered” from. Autistic people who have “lost” their diagnosis were either incorrectly diagnosed to begin with, or socially masked so well that a second evaluator decided they were “not autistic anymore” or falsely determined they were not autistic.

  • Alternative, non-Autism Speaks resources for autistic people and families

There are many other issues with this 100 Day Kit, such as its constant use of person first language despite the preference of the autistic community for identity first language, its pathologizing language used to describe autism, and hardly addressing alternative methods of communication such as AAC devices and sign language. The Autism Speaks 100 Day Kit is dangerous and should not be given to parents following the diagnosis of their autistic child.

However, the idea of a 100 Day Kit for parents as a resource is not in itself a bad one. Parents are often confused, scared, or do not know which resources to access after their child has been diagnosed with autism. So, what resources should parents access instead?

For families of younger children who want to seek services, look for non-compliance based therapies in your area, such as occupational therapy, speech language pathology, and music therapy among others and choose what works best for the specific needs of your autistic child. The SLP Neurodiversity Collective, for example, has a list of SLP providers who do not use ABA in their practice. For early interventions that combine services, explicitly ask the provider of your early intervention service if ABA tactics are incorporated in any way.

The Autistic Self Advocacy Network, an organization formed by autistics for autistic people, has many resources for autistic people of all ages. For autistic people just diagnosed, there is a guide called, “Welcome to the Autistic Community!” There is also a video version of the guide here. It recognizes the positives of autism and focuses on autism acceptance rather than discouraging it as Autism Speaks’ 100 Day Kit does. It explains autism and traits associated with autism such as stimming and special interests and introduces autistic people to the autistic community, to autistic pride and culture, and to the concept of neurodiversity. It explains the rights that autistic people have such as the Americans with Disabilities Act in the United States, and also explains that autism is not a deficit and that autistic people are not damaged or broken, but that we live in a world that is not designed for us. There are other resources for autistic people here, including guides on self advocacy , leadership, and transitioning from high school to adult life.

Lastly, if you are a parent or caregiver of a child or adolescent recently diagnosed with autism, please know that your autistic child gaining a formal diagnosis is a great thing. It can help them obtain services and accommodations they may need in the distant or immediate future. It can also help them feel a sense of validation and connect to other autistic people as they grow up. You may feel overwhelmed, and while discovering your child is autistic means a big change, autism is not the end of the world or something to be feared. It is not a burden or a tragedy or a disease or illness. It is a different neurotype, a type of neurodiversity that should be embraced, not shamed or stigmatized. Your autistic child may communicate differently, have different needs, and see the world differently, and these differences are not deficits. Be proud of your autistic child. Be an advocate for your child and teach your autistic child self advocacy skills. And remember that your fight is against ableism and discrimination, not against autism itself.

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9 thoughts on “A Look at Autism Speaks’ “100 Day Kit”

  1. I absolutely want to be supportive of people with autism/autistic people (whichever you prefer) but I had a friend who grew up with an autistic younger sister and she told me horror stories of what she experienced. Such as, never getting time or attention from the parents as they were always busy with sister, and having her prom date come to pick her up to find a pile of feces in the front hall. She moved out the day she turned 18 and never went back.

    I don’t think advising her to have some time apart with just her parents is such a bad thing. A “needy” sibling can take all the parents’ energy, leaving nothing for those who are less demanding.

    Now, some of the other advice they present is obviously horrible, but there should be a way to balance the needs of the autistic person, and the needs of those who live with them. My poor friend is still suffering from what she experienced growing up in a household that was all about her sister and no one else’s needs mattered.

    Liked by 1 person

    1. That is awful of your friend’s parents to consistently ignore her and her need for their attention and connection! But honestly, that’s something that every kid needs. Not just kids with autistic siblings. And to me, that’s the point here. Autistic kids need individual attention. Neurotypical kids need individual attention. Should we really need Autism $peaks to tell parents to notice all their children? No!

      But the way A$ presents it is what’s so troubling. The wording they chose puts the blame on the autistic sibling for the parents’ lack of attention. It’s NOT the autistic child’s fault if a sibling feels neglected. It’s the parents’ fault for not at least trying to meet the individual needs of all their kids. It’s hard to balance it all, but at least a few minutes of undivided positive attention can be given to all kids daily!

      Liked by 4 people

  2. Cassandra,

    siblings – and autistic people – have used their sadness and anger to change things.

    And happiness and positivity as well.

    The Rimland glorification – that comes direct from their biological emphasis. And it made me wonder if the guide was written pre-2006.

    [Some of the guides and texts of my youth glorified – or gorified – Bruno Bettelheim].

    Bettelheim and Rimland both introduced this recovery silliness – and it stymied a lot in the 1990s.

    And another thing siblings can get angry about and find common cause is how normality has stifled their potential and covered possibilities.

    [and, yes, Hubbard, I have read up above].

    Very true that every kid – and every adult – needs attention; connection; power; recognition.

    Access to a diversity of ways to achieve this will help in the long run.

    Like

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