Saturday, September 14, 2019

Autism Speaks 100 Day Kit Dissected





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.

Title Page:

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.

Sponsors:

They thank their sponsors next. Thank you for telling us who not to spend our money at. 



About Autism

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. 

Mental Health

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 article. 

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. 

Forms:

Some forms are helpful and others aren't.

Glossary

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.







Friday, September 13, 2019

Rebuttal: Why the Neurodiversity Movement is Harmful

The Autistic Dark Web is all over. What are they? They are essentially the Anti - Neurodiversity movement. Their stance is wanting people to be accepted is extreme. They have another article out and we will take it apart paragraph by paragraph. As per usual, exact words in the article will be italicized. I will put in my own thoughts after each paragraph. The link to said article will be at the end.

I couldn’t help feeling a little apprehensive before my meeting with Thomas Clements. The British 30-year-old has what used to be called Asperger’s Syndrome, and describes himself as ‘slightly autistic’. Until our meeting in London, I’d had few close encounters with autistic people, so I wondered how to act, and how he might respond to my actions. Would he make eye contact with me? Should I try to shake his hand?

This article is already off to a bad start. I should have known Tom Clements was behind this. He is the person who coined the term "Autistic Dark Web." You cannot be "slightly autistic." You either you are or you aren't. Ask the person what they prefer. Do not objectify autistic people. 

Despite my apprehension, the meeting went well. Clements gets extremely confused in a group of people, and avoids those kinds of situations, but has no problem with one-on-one interactions. We met in the West End, had chicken katsu curry for lunch, and then walked into nearby Chinatown, his favourite part of town.

Highlighting social awkwardness does no one any favors. 

It quickly became apparent that Clements is remarkably gifted. Like most people with ‘high-functioning’ autism, he is obsessed with a few subjects, and revels in immersing himself in them. I learnt that he is deeply fascinated by China and Japan, and has lived in both countries, where he worked as an English teacher. (He said he felt more comfortable and ‘accepted’ in both countries than he ever has in the United Kingdom – by virtue of being foreign, which often ‘masked’ the behavioural quirks for which he would normally be admonished.) As we walked through Chinatown, he spoke what sounded like fluent Mandarin and Cantonese, to order first a pair of pig buns from a street vendor, and then two small bottles of Chinese moonshine from a supermarket.

"Obesessions" are called special interests. They are passions that we do well with. Calling him "high functioning" is not doing anyone any favors. Functioning labels are harmful and even psychology agrees with us that calling someone "high functioning" does not do anyone any favors. He is highlighting that Tom Clements is autistic. WE KNOW THIS!

As well as his linguistic abilities, Clements has a comprehensive knowledge of arthouse cinema, and of American, British and Chinese hip hop. His exceptional abilities are undoubtedly linked to being what he calls an ‘Aspie’ – but he doesn’t regard autism as a gift. For Clements, autism makes daily life more difficult. It is something he could do without.

Again, trying to convince the reader that Tom Clements is autistic. Again we know this. He says that being autistic is not a gift. He does not see the advantages it has. He wants to dwell on the negative. 

‘I don’t really know what social cues are, and I have no idea what people mean by “body language”,’ he told me. ‘I despise superficial chit-chat, so I’ve offended many people without even realising it. Conversations with me are usually one-sided, because I tend to steer them towards the things I’m interested in, and overload others with information without considering their level of interest, but I’m learning to tone it down.’

Some quotes to make the reader feel pity for Clements. Autistics can learn body language. Autistics know autistic social cues. Neurotypical social cues are somewhat of a mystery and have to be taught. Again, the writer is trying to make the reader feel pity for Clements, despite how much damage he has done. 

As a result of this, building and maintaining relationships is extremely difficult for Clements, and finding a girlfriend is even harder: for autistic men such as him, ‘opportunities for having sex with someone are slim, and the chances of being able to find a long-term sexual partner are even slimmer,’ he said.

Pity party continues. Autistic people have relationships. They even get married and have autistic children. He is exaggerating. For example: I am married to an autistic man. We have been married for 14 years and together for 19. No sign of divorce yet. It is not him being autistic, its his brilliant personality. /sarcasm

Clements lives independently in a shared house near Cambridge, and earns a living as a German-English translator; but life for his younger brother Jack, who lies on the opposite end of the ‘spectrum’, is completely different.

Clements does live independently, which is wonderful. Being independent is not for everyone. There is no shame in needing support and care. They go into his younger brother who is on the "opposite end of the spectrum." A spectrum is not linear. The logic is already flawed. Get ready for your heart strings to be tugged. 

‘Jack doesn’t communicate verbally as we do,’ Clements wrote in his self-published book The Autistic Brothers: Two Unconventional Paths to Adulthood (2018):
[Jack] can utter single words and basic phrases, but his ability to construct spontaneous sentences is limited … [He] will never be able to live the life of an ordinary adult. He will require fulltime care for the rest of his life, which will necessitate someone keeping his bottom clean. We all love him dearly, but at the same time we are forced to swallow the bitter pill that he will never have a career, a house, a car or a family like the rest of us. This is a tough thing to come to terms with.

They start to say that his brother Jack is non verbal. Non verbal is not non communicating. This does not mean they will not live a fulfilling life. For example: I have a very good friend who requires support staff, is non verbal but is a pharmacologist. One has nothing to do with the other. They (non binary) uses an ipad for communication. Knows everything about every single medication there is out there.

Then he goes on how his brother will need help with ADL (activities of daily living). Again nothing wrong with that. They do not need to feel sorry for him. He can still live a happy life. Jack's disability is not about everyone else. It is about Jack. Stop being a martyr.


Autism Spectrum Disorder (ASD) is a condition, or range of conditions, characterised by difficulty with social interactions and communication, restricted interests, repetitive behaviours, and sensory sensitivity, symptoms that ‘hurt the person’s ability to function properly in school, work, and other areas of life’, as the US National Institute of Mental Health puts it. The fifth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual (2013), or DSM-5, lists three severity levels for ASD, based on the extent of social communication impairment and restricted, repetitive patterns of behaviour. 

They go on to explain what autism is accroding to the DSM V. Instead of functioning labels now there are three levels. The levels are just used to determine what services the individual needs.

The diagnostic criteria for Level 1 autism include ‘difficulty initiating social interactions’, ‘atypical or unsuccessful responses to social overtures of others’, ‘[odd and typically unsuccessful] attempts to make friends’ and ‘problems of organisation and planning [that] hamper independence’. Level 2 includes ‘marked deficits in verbal and nonverbal social communication skills’, ‘limited initiation of social interactions’, ‘markedly odd nonverbal communication’, as well as ‘inflexibility of behaviour’, ‘difficulty coping with change’ and ‘distress and/or difficulty changing focus or action’. Level 3 includes ‘severe deficits in verbal and nonverbal social communication skills [which] cause severe impairments in functioning’, ‘very limited initiation of social interactions, and minimal response to social overtures from others’, ‘extreme difficulty coping with change’, ‘restricted/repetitive behaviours [that] markedly interfere with functioning in all spheres’, and ‘great distress/difficulty changing focus or action’.

This paragraph just describes the difference between the different levels. I do not like levels so recently I tell people I am level Dungeon Master. Makes people smile. 

People diagnosed with Level 3 autism tend to have great difficulty interacting with others, and can appear to lack social skills altogether. For example, the DSM-5 describes ‘a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only, and responds to only very direct social approaches’, adding that such individuals require ‘very substantial support’ in their daily lives. By contrast, people with Level 1 autism can function independently with some support. (Level 3 corresponds closely to the 11 cases reported by the Austrian-American psychiatrist Leo Kanner in his classic paper from 1943, while Level 1 corresponds to the mild form of autism described by the Austrian paediatrician Hans Asperger in the 1930s.)

This goes on to describe level 3. This is supposed to represent "severe autism." Use Identity first language. We are not sick.

Estimates of the prevalence of autism vary widely, and appear to have increased dramatically in the past two decades. A press release issued in 2012 by the US Centers for Disease Control and Prevention (CDC) estimated that the prevalence in eight-year-old children in the US was one in 88, representing a 78 per cent increase from the estimate in 2004; the latest CDC estimate stands at about one in 59. The World Health Organization estimates that one in 160 children worldwide has autism, noting that there are ‘many possible explanations’ for the apparent increase in prevalence, ‘including improved awareness, expansion of diagnostic criteria, better diagnostic tools and improved reporting’. It notes, however, that the rate of autism in low- and middle-income countries, especially in Africa and Latin America, is unknown.

This is starting to become just as long winded as Billy Mann's non apology. Here come the scare tactics. Stating there is an increase of autism diagnosis. No kidding! Adults who have been autistic their entire lives are starting to be diagnosed! Its not rocket science. Autistic people have autistic kids. Of course there is a rise in diagnosis. 

Despite lengthy research, I could find no figures regarding how many of those diagnosed with autism fall into each of the three severity levels but, according to the CDC, about 40 per cent of children with autism do not talk at all, and at least a quarter acquire basic language at 12-18 months of age, but then lose it. The results of a longitudinal study in Australia published in 2016 are somewhat consistent with this estimate: overall, it found that 26.3 per cent of the 246 autistic children sampled were using ‘fewer than five spontaneous and functional words’ by the end of the study, and 36.4 per cent exited the study not using ‘two-word phrases’; these figures were slightly higher according to different measures and the parents’ reports, which indicated that nearly 30 per cent were not ‘naming at least three objects’ consistently, and more than 43 per cent not using ‘phrases with a noun and verb’ consistently at the end. 

He states he cannot find no figures on how many are place in the different levels. Functioning labels are harmful. Period. They are doing us all favor. Here are more scare tactics on what they call language delay or lack of language. Speech is not the same thing as language. There are more ways to communicate. They site a study done in Australia to further the scare tactics. There is nothing wrong with nonverbal communication. 

Autism often presents with co-morbidities. More than half of children with ASD also have an intellectual disability (defined as having an IQ below 70), and up to half exhibit symptoms of attention deficit hyperactivity disorder. Autistic children are psychiatrically hospitalised much more frequently than others, with 13 per cent of their hospital visits being due to a psychiatric problem, compared with 2 per cent for children without ASD. In autistic adults, the lifetime prevalence of anxiety and depression is 42 per cent and 37 per cent respectively. Autism also commonly co-occurs with epilepsy, with the highest rate in those whose IQ is below 40.

Co-morbidities is not part of being autistic. Having an intellectual disability is not part of being autistic. It is in addition to being autistic. Attention Deficient Disorder is also another co-morbidity. Its another condition on the neurodiversity spectrum. They are stating statistics to scare people into thinking that being autistic is a tragedy. 


Autism is arguably one of the most controversial subjects of our time. Due partly to a lack of understanding of its causes, current discourse on this subject is a narrative jungle strewn with young, overgrown and ill-conceived ideas jostling for a spot in the sun, including uncompassionate ‘refrigerator mothers’, microbial infectionsvaccinations, and environmental pollutants and toxicants, to name but a few.

Autistic people have been trying to tell neurotypicals about autism. They speak over us with little understanding. They say its controversial because there is little understanding of its causes. Who care what causes it, we need basic human rights. 

Into this maelstrom came the neurodiversity movement, whose advocates celebrate autism as a gift that is an integral part of identity. They promise to make the voices of autistics heard, and to improve their quality of life by making the world more accepting of, and accommodating for, them, after decades of being marginalised and victimised. However, in recent years, there has been a backlash against this – growing numbers of people are now speaking out against the neurodiversity movement, claiming that it does not represent them and, more importantly, that it ignores the plight of those with severe autism.

Autism is a gift. Why shouldn't we celebrate who we are? We advocate for EVERYONE. Neurodiversity is for everyone. We do not leave anyone out. Autistic Dark Web segregates everyone according to supports needed. 

The term ‘neurodiversity’ was coined in the late 1990s by the sociologist Judy Singer, who argued that autistic people had been oppressed in much the same way as women and gay people, and suggested that their brains are merely wired differently from those of ‘neurotypical’, or nonautistic, people. The movement is an extension of the civil rights movement and the deaf pride movement that emerged after the introduction of cochlear implants. Writing in The Atlantic magazine in 1998, the investigative journalist Harvey Blume said: ‘Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general.’

They give a breif history on neurodiversity which is fine. Try capitalizing Deaf like the Deaf community wants. He is right. Cochlear implants parallels cure culture. 

In the past decade, neurodiversity’s popularity has grown enormously, largely because of the buzz surrounding Steve Silberman’s book NeuroTribes (2015). Today, the internet and mass media are replete with articles proclaiming the benefits of employing people with autism, who have a hidden potential that can benefit endeavours such as branding and design – if only we can stop thinking of them as being disabled. This way of thinking has now entered the mainstream: in the US, for example, representatives of the Autistic Self Advocacy Network have advised federal government policymakers on how they believe issues such as healthcare and community integration will affect autistic people; and in the UK, the Labour Party in 2018 launched an Autism Neurodiversity Manifesto, with the social model of disability as one of its key principles.

Steve Silberman's book was amazing. He followed around autistic people. He was able to tell the world about neurodiversity. It was great for our community. Why shouldn't we be empowered? Should we feel sorry for ourselves? I think not. 

On the face of it, this sounds admirable – the neurodiversity movement has indeed empowered many with autism, most recently, the young climate campaigner Greta Thunberg who described it as her ‘superpower’. But the movement is proving to be harmful in a number of ways.

We are autistic not "with autism." We are not sick and cannot leave our autism behind. Again people bringing Greta Thunberg into this conversation. Leave this child alone. They are going to say how we are harmful. Here we go. You ready? 

Firstly, neurodiversity advocates can romanticise autism. While many with mild forms of autism might lead relatively ‘normal’ daily lives with little or no assistance, many who are more severely affected cannot function properly without round-the-clock care. Yet John Marble, the self-advocate and founder of Pivot Diversity – an organisation in San Francisco that aims to ‘pivot autism towards solutions which empower autistic people, their families and employers’ – posted on Twitter in 2017: ‘THERE IS NO SUCH THING AS SEVERE AUTISM, just as there is no such thing as “severe homosexuality” or “severe blackness”.’

We do not romanticise autism. We want to be accepted. Is that so horrible? You are either autistic or you arent. There is no "mild" autism. People need support. It happens and there is nothing to be ashamed about. These people want the reader to be angry at people fighting for equal rights. How dare we want to be treated as human? 

Worryingly, this trend of romanticising autism has extended to other conditions that can be severe, debilitating, and life-threatening. There are now groups of self-advocates who celebrate depression and schizophrenia. This could also be related to the growth of pro-anorexia websites, as well as the more recent emergence of ‘addiction pride’.

Why should we not be proud of who we are? We should not be empowered? People should be ashamed of who we are? I do not think so. People are coming to terms with parts of themselves. Pro anorexia websites do not compare to neurodiversity or Mental Ilness pride. There is no addiction pride. There is recovery pride. They climbed out of a hole that is really hard to do. They should be proud. They are reaching. Its like comparing cancer to diabetes. It does not compare and that comparison is harmful. 

The idea that autism is ‘a variation of normal’ is at odds with scientific understanding of the condition. The general consensus among neuroscientists is that autism has neurodevelopmental origins, with recent research showing that it is associated with abnormalities in brain cell numbers and white-matter structure, and defects in synaptic pruning, the process by which unwanted synaptic connections are eliminated. The research also shows that genetics plays a major role: each autistic individual carries a large number of very rare or unique gene variants, together with extra copies of genes, deleted genes and other chromosomal disruptions. Some of these are inherited, while others are generated anew at fertilisation and during the earliest stages of development. Thus, it seems that every person with autism harbours a unique combination of such genetic variations, which manifest as a unique set of behavioural symptoms.

It is a variation of "normal." What is normal? Of course an autistic brain is different than a typical brain. We have told them this from the beginning. Autism speaks launched a genome project and they cannot find the "autism gene." There is not one genome where the "autism" gene exists. They just confirmed that being autistic is genetic. 

However, neurodiversity advocates reject the medical model of autism, in favour of an as-yet undetermined social model that blames the problems faced by autistic people on systematic ‘ableist’ discrimination. Some of their reasons for doing so are valid. Historically, autistic people have existed on the margins of society, and have been victimised by the medical-industrial complex that aimed to coercively eliminate them and others considered to be disabled. For example, Asperger was complicit in the Nazi regime’s euthanasia programme for disabled children.
Since then, the medical view of autism has changed dramatically. Researchers and clinicians do not want to eradicate autism – they aim to understand it in order to develop treatments for those who want them.

We do reject the medical model of autism. Autism is only medical because the experts say its medical. They do reiterate that we were started to be wiped out during World War II during the T4 program. This is an important part of our history. Medical professionals do seek to irradicate autism. Everywhere we go with our children, they want genetic testing so they can see if they should have children. That's eugenics. 

Despite many important medical advances, there is still a lack of understanding of the causes of autism, which leaves many parents desperate, and makes them willing to try just about anything to help their children. Consequently, there is a huge market for ineffective or untested treatments and quack remedies – from craniosacral therapy and neurolinguistic programming to therapies that claim to enhance ‘upper chest “emotional breathing” to help us to learn through emotional charge on experience’ and wearable devices that use so-called Bilateral Alternating Stimulation-Tactile technology to transfer ‘alternating vibrations to alter the body’s fight, flight or freeze response to stress and anxiety’, which apparently restores ‘homeostatic nervous system functioning, allowing you to think clearly and experience calm’.

This article does say how parents are very desperate to try anything. They fail to mention that the neurodiversity movement aims to save children from abuse treatment such as MMS, cheletion, GcMaf, etc.  Follow the MMS link to find out how harmful ingesting industrial bleach is. If you read my blog regularly, you will know exactly what it is and how dangerous it is. Parents are willing to try anything which is why the tragedy narrative is extremely dangerous. 

Neurodiversity advocates still label those who express a desire for treatment or cure as Nazis and eugenicists. ‘When we fight for autism rights, we are fighting for our continued existence,’ wrote the self-advocate Jackson Connors in the People’s World newspaper this June. ‘Against our dehumanisation. Against a “cure”, which is a dogwhistle for ableist eugenics. And against the systems that push so many of us to poverty and suicide.’

We label quack treaments and conversion therapy as ableist. Cures lead to bleaching the kids. There is no cure. There is nothing to cure. Period. We do not call people Nazis. We do not use that term lightly. We do call people eugenicists for wanting to prevent us from existing. We want to be treated like humans. Not subhumans. Awareness rose the suicide rate in autistics. It increased bullying. Bullying causes suicide. Let us live. 

In their zealous pursuit of autistic rights, some advocates have become authoritarian and militant, harassing and bullying anyone who dares to portray autism negatively, or expresses a desire for a treatment or cure. This extends to autism researchers in academia and the pharmaceutical industry, and also to the parents of severely autistic children. One widely used treatment is Applied Behavioural Analysis (ABA), which involves intensive one-on-one therapy sessions aimed to develop social skills. However, neurodiversity advocates consider ABA to be cruel and unethical, and campaign for withdrawal of government funding for the treatment.

ABA is drawn from Gay conversion therapy. I did a comparison on this very subject. Click here to see the similarities. Play is not a pathology. ABA causes PTSD. ABA is conversion therapy for autistic people. Support your child. There is a reason behind the behavior. It is behavior centered, not child centered. There is no reason a child should be in any therapy for 40 hours a week. 

Furthermore, they are trying to legitimise self-diagnosis of autism. ‘Neurotypicals continue to dominate the conversation and speak over autistic voices, which ultimately reinforces a pathologising viewpoint about us, and centres around the idea that somehow we fundamentally cannot speak for ourselves,’ wrote Solveig Standal on the Thinking Person’s Guide to Autism blog this April. Standal continues:
Yes, ultimately some of us will come to realise that they are not really autistic, but the exploration still helps them find answers about themselves, and no one is harmed in the process. However, when we deny someone’s autistic identity, we shut them out of the whole process, deny them access to the tools they need to better access the healthcare system, and potentially deny them their formal diagnosis altogether.
Self diagnosis has become a necessity. The access to diagnostics is very limited, especially in the United States. Healthcare is not accessible to everyone and there is no access. Saying that it is not valid is classiest. Not everyone access. Those who self diagnose do not take it lightly. Self diagnosis leads to clinical diagnosis.  Neurotypicals do speak over us and leave us out of the conversation. Saying that they might not be autistic may be true but doctors make mistakes all the time for diagnosis. When I was a kid, I was diagnosed just as ADHD. When I was 32, they realized I am also autistic. 

While many among the autism researchers are aware of these problems and find the situation extremely frustrating, very few are willing to speak up, for fear of jeopardising their research funding, offending a highly sensitive patient and parent population, or being targeted for harassment themselves. In recent years, however, growing numbers of parents and carers have begun speaking up against the neurodiversity movement, saying that the way its advocates portray autism does not resonate with their own experiences of the condition.

Parents and carers do not experience autism. Autistic people experience it. They can speak for themselves. LET THEM. Nothing about us without us!

One of them is Bruce Hall, the 65-year-old father of twins Jack and James, 18, in California. ‘The boys both have severe autism and intellectual disabilities, and their behaviour has always been very challenging,’ Hall told me. ‘Up to the age of nine, James would throw tantrums and scream for hours. He can speak a little now, although you wouldn’t understand much of it. Jack doesn’t speak at all.’

Behavior is communication! If you find the reason behind the behavior and fix the problem, the behavior stops. Calling meltdowns "tantrums" is very harmful. They are making it all about the parents, not the children. Just because they cannot speak, does not mean they cannot communicate.

Hall and his wife Valerie published a book called Immersed: Our Experience with Autism (2016), describing in detail daily life with their children:
In public, the boys may throw a fit at any moment – we can’t predict it, and we can’t be certain of the cause. It could be because of the lights, or the sounds, or the number of people around. It could be because they don’t feel well or because they’re just tired. It could be a combination of these things, or none of them.
Even typical kid-friendly entertainments do not ensure that the boys will react positively. Their understanding of situations is limited, as is their tolerance … what normal kids consider fun, autistic kids may consider baffling and terrifying.
These martyr parents wrote a book about their experience raising autistic twins. They are not "throwing a fit," they are having a hard time with their surroundings. If they were proactive, they could see it coming. I have three autistic children and I can see when they are getting uncomfortabl early on. They show signs, if you know how to look for them. Sensory stimuli can be very painful. Stop trying to expect autistic children to behave typically. Not every child is the same. If the child finds a surrounding terrifying, remove them or change it. Not the child. 

The disconnect between the neurodiversity narrative and the experiences of severely affected autistics led another group of advocates to establish the National Council on Severe Autism, based in San Jose in California and launched earlier this year.


Neurodiversity does not leave people out. The autistic dark web does. Neurodiversity is for EVERYONE. This article is only concentrating on autistics who need increased support. The individuals who can live mostly independent are being left out of this conversation. 

‘I have two kids with nonverbal autism,’ said Jill Escher, founding president of the organisation. ‘It’s an extremely severe neurodevelopmental disability – they can’t talk, can’t read or write, can’t add one plus one, and lack any capacity for abstract thought. [Neurodiversity advocates] trivialise this, and cherrypick naive, feel-good stories that portray autism falsely instead of grappling with the reality.’

"Non-verbal autism" isn't a thing. There are autistics who are non verbal. Being non verbal doesn't make people who are verbal less autistic. You either are autistic or not. She goes into how horrible her children have it. They cannot read, write, do math or anything like that because they need someone to teach them the way they learn. We do not like feel good stories because they are inspiration porn.  It is not all puppies and kittens. We have our struggles but we prefer not to dwell on them. 

‘Some aspects of [the neurodiversity movement] are very convenient for all autism advocates, because we all want to portray our children in a way that will engender acceptance,’ she added. ‘If my kid’s having a meltdown at the supermarket, or taking his clothes off, or screaming, I want people to appreciate that his behaviour comes out of a difference in his brain wiring. But do I think his behaviour and wiring is natural? Absolutely not.’

We are autistic advocates, not "autism advocates." Taking a child into the store when you know they cannot clearly handle it, you do not bring them there. It is not rocket science. They will not meltdown if they are having a rough time with their surroundings. There is nothing unnatural about us. Stop being ableist.

The neurodiversity movement is dividing both the autism community and autism researchers. Advocates make the distinction between autistics and ‘neurotypicals’, or nonautistics. This fosters an ‘us versus them’ mentality, wherein nonautistic people are regarded as an oppressive enemy. It also fosters intolerance towards different ways of thinking about autism, as well as a deep and unhealthy mistrust of the scientific and medical communities. 

Neurodiversity is for everyone. We advocate for EVERYONE. We do not leave the autistics who do not require much support out like these people are doing. We are different and we have a right to distinct between different types of people. We are all different. That is the beauty of diversity. We do not mistrust the scientific or medical communities. This could not be further from the truth. 

Ironically, a social-justice movement that aims to highlight the ways in which autistic people have been mistreated by society is now directly responsible for the mistreatment of the most vulnerable of all autistics – many of whom are too severely affected by their condition to speak up for themselves. In standing up for their rights, a group of marginalised people are effectively hyper-marginalising the very people they claim to be advocating for. They have monopolised the public discourse on autism, and continue to do whatever they can to silence any dissenting voices; this inability to debate and try to reach compromise is a problem not only for the autistic community, but for wider society.

We speak up for everyone. We do not harm autistics who need more support. Everyone can speak up in their own way and these people refuse to believe that. There is more to communication than speaking.

It also poses a major problem for autism research. Scientists are now beginning to realise that there is selection bias against autistics with intellectual disabilities throughout all fields of autism research; although nearly half of the autistic population also has an intellectual disability, the majority of research has focused on those with relatively intact language and cognition. Thus, individuals considered to be ‘low-functioning’ are being overlooked by the research community.

We include intellectually disabled autistics. Neurodiversity is for all autistics. They are overlooked by the research community but it has nothing to do with Neurodiversity.

‘The movement is harmful because they’re trying to terrorise people into silence, and we’re just a few of the many victims of their bullying and smear campaigns,’ Escher said. ‘There’s a toll on scientific research, too, because the neurodiversity platform apparently doesn’t believe it’s important to investigate the causes of autism.’

We do not terrorize. We educate. There is a big difference. If people find the cause, it will lead to eugenics. Just like the genetic test for downs syndrome. People will abort just because they are carrying a downs syndrome baby.

It is, therefore, time to start thinking differently about neurodiversity, and to recognise the importance of free speech in the public discourse on autism, because if neurodiversity means anything, it means accepting that we all think differently, and that not everyone takes pride in being autistic.

This article is right on one thing. Not everyone is proud of being autistic. Not everyone is ready to come out as autistic and that is OK. No one said that there was anything wrong with that. But trying to tell us we are wrong in doing so is wrong. Everyone is an individual. 

‘If you’re happy being autistic and think of it as part of your identify, that’s great, and I don’t want to upset you or hurt you, but don’t tell me I can’t try to help ease my sons’ suffering,’ said Hall. ‘For them, autism is a life-altering, cruel disability, and I’d do anything to help them feel good and give them a better quality of life.’

I appreciate that they accept we are happy about us being autistic and its a part of our identity. But they do not know that their son is suffering. Does he indicate he his suffering? Not saying being autistic is all puppies and unicorns but it is not the same thing as having a terminal illness. He says its cruel but that's from an outside perspective. 

‘Neurodiversity advocates ignore the harsh realities of severe autism, and want to forget about my sons and others like them,’ he added. ‘They’ve done a good job of hijacking the message and monopolising the discourse on autism, and are controlling the narrative so tightly that people like my sons will have no choice in the world.’ Thomas Clements echoes this sentiment – as he wrote in The Guardian last month, the trivialisation of autism by neurodiversity advocates comes at the expense of those at the lower end of ‘the spectrum’, like his brother Jack.

We do not ignore autistics with more support needs. Just the opposite, we include everyone. They want to leave out the advocates out of the conversation. They keep on saying how hurtful we are. Autistic people who are independent are the enemy is what i got out of this whole article. There was a lot of fear mongering. Just accept your child and support your child the best way you can without using abusive therapies. That is all we ask. Another harmful article brought to you by the autistic dark web.

Original article:

https://aeon.co/essays/why-the-neurodiversity-movement-has-become-harmful?fbclid=IwAR3v8r3b3T-SsHWgep1iLiwO1025vP2iASbf24_275S3sxWs2eF8LMWDCLM