This kit has been a major controversy when it was announced. There are two kits. One for young children and one for school aged children. I am going to do this rebuttal a little bit differently. Each one is about 100 pages and I do not want to make this longer than it needs to be. I will break it down into sections. I will link to them at the end of this article as a source.
The controversy happened when Sesame Street announced their partnership with Autism Speaks and the Ad Council. During this partnership, they were preaching early diagnosis and early intervention. Early intervention means ABA.
The title page it states the purpose of the kit,”A tool kit to assist families of young children in getting the critical information they need in the first 100 days after an autism diagnosis.” Sounds innocent enough.
It also has the disclaimer: “Autism Speaks does not provide medical or legal advice or services. Rather, Autism Speaks provides general information about autism as a service to the community. The information provided in this tool kit is not a recommendation, referral or endorsement of any resource, therapeutic method, or service provider and does not replace the advice of medical, legal or educational professionals. Autism Speaks has not validated and is not responsible for any information or services provided by third parties. You are urged to use independent judgment and request references when considering any resource associated with the provision of services related to autism.“
They state that they are not recommending the services when they clearly are. Seems sketchy? Kerri Rivera has the same disclaimer on her website too. This should be foreshadowing to what comes next.
They thank their sponsors next. Thank you for telling us who not to spend our money at.
They start off innocently enough. They state that there is not much information that is reliable out, which is true. They state that thousands of families are in this information. This is true. They state that the parents may feel sadness or relief. They should feel relief but all feeling are valid. No one’s feelings should be invalidated. They just need autistic adults to educate them (of course AS does not say this)
Why does my child need a diagnosis of autism?
There is a lot of fluff in this answer. They state that the signs can be obvious or not so obvious. They use the word “severe.” They start with functioning labels so early. One thing they do say that I completely agree with. “It is important to remember that your child is the same unique, lovable, wonderful person he or she was before the diagnosis.” A lot of parents do forget this. It goes on to say that a diagnosis allows children to receive the services that they need.
What they fail to say: They become part of a community. It is part of their identity. Being autistic is part of who you are. The autistic community is a beautiful thing to be a part of.
How is autism diagnosed?
They claim no medical test to diagnose someone as autistic. This is true. They say “symptoms” vary. There are no symptoms. We are not sick. They are called signs. We are people, we are just different than our neurotypical peers.
They claim that children are diagnosed with having developmental delays before they get diagnosed as autistic. This is correct. They state that these children would already receive early intervention. They fail to say that early intervention is ABA. ABA is conversion therapy for autistic children. They say that the child may be referred to an audiologist because they rule out a hearing loss.
This is true. A hearing loss does not mean they are not autistic. I am a prime example of that.
They say the child will be referred to speak therapy to determine language skills. An occupational therapist will determine physical and motor skills. This is true and receiving both speech/language therapy and occupational is very important. They did not mention that occupational therapy can help with sensory integration.
They state that once there is a diagnosis, request a comprehensive report. This will help with receiving services for your child. This is true. You cannot do anything related without that report. What they do not say is some school districts want an educational diagnosis. A medical diagnosis is not valid in those school districts. I do not believe it is medical, its just what they call it,
What is Autism?
Direct quote from the kit: Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. With the May 2013 publication of the fifth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (commonly referred to as the DSM-5), all autism disorders were merged into one umbrella diagnosis of ASD. Previously, they were recognized as distinct subtypes, including autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger Syndrome. The DSM is the main diagnostic reference used by mental health professionals and insurance providers in the United States.
Nothing wrong with this. This is a definition from the DSM V.
They state that people may have heard of “classic autism” or “Kanner’s autism.” This is pushing functioning labels again. They describe it as “severe autism.” This does get old. Functioning labels are harmful.
Direct quote :There are two domains where people with ASD must show persistent deficits: 1) persistent social communication and social interaction 2) restricted and repetitive patterns of behavior
Person first langauge again. Autistics, by majority, prefer Identity First Language. The “deficiets are not something that people are missing. We just do it differently. The restrictive and repetitive patterns of behavior is called stimming or self stimulatory behavior. Its helps us regulate ourselves. That is it! Call it what it is and stop dancing around it.
They call sensory seeking “unusual interest in sensory aspects of environment.” It is sensory seeking. Call it what it is.
They state that with each diagnosis, there will be diagnosis of genetic “causes” or any intellectual disability. They do not always do genetic testing. They did not on my kids because later we found out that both of the parents are autistic as well. They did not find it necessary. Some of the genetic differences are Fragile X syndrome Retts syndrome and others. These genetic differences are not a cause of being autistic. The 10k genome project, known as MSSNG
, proved this. There will also be a note of a seizure disorder or any other medical conditions.
How Common is Autism?
The CDC states there is a statistic of 1 in 59 American Children are diagnosed as autistic. They state that there is a 10 fold increase in the past 40 years. This is used as a scare tactic. This is due to autistic adults getting diagnosed in adulthood. This was missed in the 70’s and 80’s. People are realizing they fit the criteria. Adults, such as myself, wanted answers. To further their “light it up blue” campaign they show the state of there are 1 in 37 boys who are autistic and 1 in 151 girls who are autistic. Do they realize that there is more than two genders?
What causes autism?
Direct quote: “Not long ago, the answer to this question would have been “we have no idea.” Research is now delivering the answers. First and foremost, we now know that there is no one cause of autism, just as there is no one type of autism. Over the last five years, scientists have identified a number of rare gene changes or mutations associated with autism. Research has identified more than 100 autism risk genes. In around 15% of cases, a specific genetic cause of a person’s autism can be identified. However, most cases involve a complex and variable combination of genetic risk and environmental factors that influence early brain development.”
They say they know the cause of autism but they show they really do not know the cause. There is no one gene connected to us. It is genetic. Which environmental factors? Looks like they are still holding on to the vaccine link without saying it.
More information about the Symptoms of Autism
They go on to break down the different characteristics of autistic people for new parents. They do so with the tragedy narrative. Here are some quotes that show this:
“Taken together, they may result in relatively mild challenges for someone on the less impacted end of the autism spectrum. For others, symptoms may be more severe, as when repetitive behaviors and lack of spoken language interfere with everyday life.“
“A small percentage of children lose their diagnosis over time, while others remain severely affected.“
“It is common – but not universal – for those with autism to have difficulty regulating emotions. This can take the form of seemingly “immature” behavior such as crying or having outbursts in inappropriate situations. It can also lead to disruptive and physically aggressive behavior. The tendency to “lose control” may be particularly pronounced in unfamiliar, overwhelming or frustrating situations. Frustration can also result in self-injurious behaviors such as head banging, hair pulling or self-biting.“
Autism Speaks actually says that autistic people have strengths. This is a new one. They usually go with the tragedy narrative. They do use functioning labels, which they KNOW that we do not use functioning labels. They are harmful:
“Along with the challenges that autism involves, you may have noticed that your child also exhibits areas of strength. Although not all children have special talents, it is not uncommon for individuals with autism to have exceptional skills in math, music, art and reading, among others. These areas of expertise can provide great satisfaction and pride for the child with autism. If possible, incorporate your child’s areas of expertise into his or her everyday activities and use them whenever possible as a way for him or her to learn and excel. The following is adapted from Sally Ozonoff, Geraldine Dawson and James McPartland’s A Parent’s Guide to Asperger’s Syndrome and High-Functioning Autism. Just as individuals with autism have a variety of difficulties, they also have some distinctive strengths. Some of the strengths that individuals with autism have may include: – Ability to understand concrete concepts, rules and sequences – Strong long term memory skills – Math skills – Computer skills – Musical ability – Artistic ability – Ability to think in a visual way – Ability to decode written language at an early age (This ability is called Hyperlexia – some children with autism can decode written language earlier than they can comprehend written language.) – Honesty – sometimes to a fault – Ability to be extremely focused – if they are working on a preferred activity – Excellent sense of direction“
How Can my child have autism? He seems so smart
Being autistic has nothing to do with intelligence. Period. That is it.
Physical and Medical Issues that May accompany Autism
They start with epilepsy. Epilepsy is common with autistic kids. They state that seizures do affect cognitive abilities. Of course it does. It depends on the type of seizures. (I will do an informative post of epilepsy at another time.)
They continue with genetic disorders. There are different genetic disorders such as Fragile X and Rett syndrome. They can appear in an allistic child. It does not only happy in autistic children.
They go on to Gatrointestinal issues. A lot of children have GI issues. Children with anxiety have it manifest as GI issues. Correlation does not equal causation.
They continue with sleep dysfunction. Sleep issues are common with children. All children, not just autistic kids. They need to get their facts straight.
They continue by exploring “sensory integration dysfunction.” It is called sensory processing disorder. You can have sensory processing disorder without being autistic. There are some autistic kids without sensory processing disorder. That is not common, but it happens.
They explain PICA. This is common with autistic kids BUT it does not always happen with autistic kids. PICA is an eating disorder that makes a person eat items that are not food. If your child has PICA, you must make sure chemicals are locked away so they cannot get them.
They describe ADHD as a mental health disorder. It is not it is part of the neurodiversity spectrum. According to Science Daily,” Attention-deficit/hyperactivity disorder (ADHD) (sometimes referred to as ADD for those without hyperactivity) is thought to be a neurological disorder, always present from childhood, which manifests itself with symptoms such as hyperactivity, forgetfulness, poor impulse control, and distractibility.“
They describe anxiety is a mental health issue. That is true. It is very common in children in general. Not just to autistic people.
You, Your Family, and Autism
This is the section that raised the controversy between Autistic Self Advocacy Network. Autism Speaks encourages parents to go through the five stages of grieving for a child that they still have. Morbid, isn’t it?
Caring for the Care Giver
This section is important. You cannot care for anyone without caring for yourself. This isn’t just for parents of autistic kids. This is for ANYONE caring for ANYONE. This is not specific for autistic families. They specify what you should do. You know how to care for yourself. You do not need a hate group telling you how.
What We Should Know about Our Younger or Future children
This section is for scare tactics. They cite studies. To me its to scare parents into eugenics. Purposely not having children because they might be autistic. After they do this, they advertise that they need participants in their studies. So a worried parent is scared into participating because it may be the only way for a “cure.” They do not specifically say cure but they are leading to it. Let’s not have the T4 program
all over again.
How will this affect our family?
They say “Even though it is your child who has the diagnosis, it is important to acknowledge that autism affects the whole family.”
They have sections on breaking the news, sharing your journey, tipsy for the family. This feeds more into the tragedy narrative and parent martyrdom. The terms “autism parents” and “autism siblings” come from this line of thinking.
Developmental Milestones: Understanding Your Child’s Behavior
Every child develops differently and reaches milestones at their own time. They may not reach certain milestones and that is okay. They emphasize on milestones by a certain age. Not everyone meets milestones at the same time. Not everyone is the same.
Getting Your Child Services
They say that good services will have at least these four things:
1. It will provide your child with instruction that will build on his or her strengths to teach new skills, improve behaviors and remediate areas of weakness.
2. It will provide you with information that will help you better understand your child’s behavior and needs.
3. It will offer resources, support and training that will enable you to work and play with your child more effectively.
4. It will improve the outcome for your child.
They start with improving behaviors. Improving behaviors means ABA. There is a reason behind the behaviors and behavior is communication. They fail to mention that.
Accessing Services: Your Child’s Right to Public Education
This section gives good information about American public schools and what children are entitled to. One thing they fail to mention. Parents can home school their child if the public school system does not meet their needs. It should ALWAYS be an option.
How Do I get Services Started For My Child
They go through different interventions that they recommend or don’t as stated in the disclaimer.
This is where they push ABA and actually say it. It is conversion therapy. It causes PTSD for children as they grow up. It is not apparent right away. Beware of ABA
Pivital Response Treatment- They admit it is based on ABA. (i will do an article on it in the future)
Early Start Denver Model- This is essentially ABA for ages 12 months to 48 months.
Floortime (DIR).- It can be calming for the child if it follows the child’s lead. BUT it can be used with dangerous ABA methods. It really depends how it is carried out.
Relationship Development Intervention (RDI)- This is essentially classic conditioning. It is the same methods I use to reinforce a behavior in a dog. They sit and I say the word and give a treat. They use this on children. Classic conditioning I have described in my behaviorism
TEACCH program- this intervention is supposed to build on the skills the children already have. It is used in addition to other methods and normally used in a school setting. Looking further into it, it is based on Ivar Lovass methods. He created the barbaric practice of ABA.
Social Communication/Emotional Regulation/Transactional Supports (SCERTS)- this uses practices from ABA. It is learning through ABA methods from other children. This is problematic. It focuses on the family, not the autistic individual.
Treatment for Biological & Medical Conditions Associated with Autism
This section they describe Speech/ Language, Occupational and Physical therapy as part of intensive behavioral therapy. THIS IS NOT TRUE! You can have these effective, non harmful therapies without ABA. My children receive all three of these and they do not use ABA methods at all. I won’t stand for it.
They describe the PECS system. I am a fan of this. You do not need ABA to use the PECS system. PECS is explained here.
For autistic kids to learn social skills, they do not need training. What worked for us was enrolling our kids in scouts. They were supported as people and learned at their own pace. In this program, the child is supported by their peers. Scouting benefits Autistics
Auditory Integration Therapy- it is used for desensitization for sensitivity to sound. Its the same idea of desensitization methods in dog training. This therapy was banned by the FDA, approximately in 2006.
Gluten free, casein free diet (GFCF)
– a restrictive diet where the child cannot have gluten or dairy products. This is unproven. It is for people with celiac disease. They have a medical need for this. Autistic people should not have their food restricted. Let the kids eat their favorite food. There is no scientific evidence for this type of diet helping autistic people. Its cruel.
Direct quote: “It makes sense to focus on getting your child engaged in an intensive behavioral program before looking at other interventions. ”
Is There a Cure?
They say 10% of kids lose their diagnosis. This happens because some kids are misdiagnosed. It happens. Experts are not perfect.
Let me answer that question. There is no cure. There is nothing to cure. Period.
How Do I Choose the Right Intervention?
They are right. It can be overwhelming. But Autism Speaks is going about it the wrong way. They are pushing ABA
Definitely should research who is going to be working with your child. You should interview each person working with your child. You should also make sure there is no negative effects from each therapy. Anything that says intensive therapy, stay away from. You should be very involved with the therapies your children are experiencing.
Technology and Autism
They go over the helpful technology that is very helpful to autistics. This section is fine as it is. It is very helpful.
Autism and Wandering
This is a good section. They suggest:
1. secure your home. This is one way to keep your kids safe.
2. Consider a locating device- if your child wanders out of your home, you will be able to locate them and they will be safe.
3. Consider an ID bracelet. If someone finds your child, they can call you. Do not put your child’s name on it. That could be dangerous.
4. Teach your child to swim. This is a must! Here in South Florida, there are bodies of water all over the place. My local county offers six weeks of free swimming lessons for any child under 12 with a disability diagnosis. All of my children had taken advantage of it. Its a great tool. Find out if it is offered in your area. It is the leading cause of death for a child that elopes.
5. Alert your neighbors. I would say it would depend on your neighbors. My neighbors would not be a good idea but in some neighborhoods it depends. Use your judgment.
6. Alert first responders. This is a good idea. I contacted my local police officer that patrols my area. He met the kids and we explained if they hear screaming that the kids have a rough time sometimes. This made them aware. When my diabetic son had an emergency, they were aware when taking him to the hospital. They were amazing with the kids.
A Week by Week Plan for the Next 100 Days
They give a week by week plan. Do not follow it. Go at your own pace. You know deep down what is best for your child and you do not need a hate group telling you what to do. They tell you how to get organized. You do what works for you, not what they say you should
Ideas for Purposeful Play
Let the kids play. This section treats play as pathology. If they line things up, let them. If they turn a toy car over and spin the wheels let them. Let the kids play as they play.
Some forms are helpful and others aren’t.
Glossary is comprehensive but there is a lot of ableism in there.
My final thoughts.
There some good information on it but the severe ableism screams over it. It pushes “intensive behavior therapy” and we all know this is extremely harmful. You should not grieve a child you still have. Your child is still your child but they have a negative spin on it. I would not follow this kit at all. If you need help, ask an autistic adult. You all know my inbox is always open. There is too much misinformation in this kit.