Category Archives: autism education

The 3 P’s of Communication Skeptics

Nonspeaking does not mean non-thinking. That’s my mantra. Nonspeaking may be caused by motor issues. That’s my message. Motor issues do not cause stupidity. That’s my point.
Being locked internally because of motor issues is not the same as a language processing problem and should not be treated as such.

There is an overwhelming need for professionals to learn about autism from those who live it and can describe it in words. I am referring to the nonspeaking typer who tries to explain autism from the inside out. There are now quite a few of us, and the number is growing. Our messages are always the same. Intact mind/disobeying body. Smart head/dumb body. Thinking mind/non-thinking motor system. Not speaking is not the same as not thinking.

In the six years since my first book, Ido in Autismland, was published, only one researcher ever contacted me to learn about autism from me. That’s kind of pathetic, if you think about it. I’d like to help guide their research based on my real symptoms to help improve treatments and theories. A fair skeptic and an inquiring scientific thinker might take the time to meet a proficient typer, to ask questions, to learn about their journey to increasing fluency. But they don’t, for some reason.

All this is due to the 3 P’s that preoccupy the skeptics. Proofs, prompts and presumption of competence (or lack thereof).

Proof

In ASHA’s response to my editorial, they say they need testing proof before they can entertain the possibility that RPM might have any validity. This intrigues me for a couple of reasons. There is a need to validate claims and I think we all recognize that, but there is more than a single way to get data. Observational data and longitudinal studies, including film, would be one way. Another would be well-designed studies that factor in the motor and anxiety issues people with autism describe. Without doing so, there is a significant chance of a poorly designed study producing skewed or incorrect results.

Have there been studies and internal reviews in the so-called “evidence-based” autism treatments, such as ABA and speech therapy, as to why a significant number of nonspeaking people struggle to progress using these evidence-based methods? It is too easy an out to say progress doesn’t occur because the person is “low-functioning.” If that’s the case, it doesn’t take ten years of costly treatment to find out. On the other hand, some so-called “failures” of evidence-based treatments go on to become successes, as I did, when the treatment adequately addresses the motor issues impeding performance.

Prompts

In ABA the prompts are constant, duly noted in logbooks. In speech therapy the prompts are constant too. There are prompts in PECS, Adaptive PE, in school, in every moment, in every treatment, every day of an autistic kid’s life.

RPM uses prompts too. No surprise really. The acronym stands for Rapid Prompting Method. But the prompts do not consist of motoring someone. People are moving their own arm independently. The prompts are to look, to scan an array of letters, to reach far enough, to help someone gain skills in motor precision and in hands and eyes synchronizing for the purposes of communication. Beginners get lots of prompts. Fluent people get few, and mostly just type, though someone may say “keep going,” or someone may hold a letter board steady. As skills improve, prompts go down. Why are prompts acceptable in every autism treatment except touching letters for the purposes of communication? It’s illogical. And it’s all due to this issue:

Presumption of Competence

Well, you can either presume I’m incompetent or competent. I prefer the latter.

There are two philosophies guiding much of autism theories and education. In one there is no presumption of competence. Rather, the nonspeaking individual is determined to be low-functioning intellectually and not properly processing human speech, thus requiring simplified lessons and constant drilling. This is the prevailing theory.

In the other, there is a presumption of competence— that is, an intact mind may be buried behind a messed up motor system caused by neurological factors. Therefore, if the person is taught to move properly to point and spell words, that person may learn to express thoughts and potentially get a more normal education. Many, once thought to be hopeless cases, have proven that, like books, they shouldn’t be judged entirely by their cover.

That has been true for me and for many, many others. That is why I wrote my editorial, my blog and books. The professionals who insist they speak for science too often ignore evidence that may intrude on their theories, but facts will out. There are more typers each day, and once someone has a voice, he or she wants to speak out.

Not Talking is Not the Same as Not Thinking

Welcome to WSJ readers! I am honored you took the time to check out my blog.
Here is a link to my opinion piece in Monday’s Wall Street Journal. (Apologies- it is behind a paywall).

Not talking is not the same as not thinking.
The converse is also true.

The American Speech Language Hearing Association, or ASHA, insists that the true voice of nonspeaking autistic people is best left to pictogram systems and garbled speech.
Here is their brief video statement.

Here are films of people with autism who have broken free by learning the methods ASHA disdains. Please note, there are motor challenges in autism, as evident in the films.

Here is a link to an organization of professionals, autistic people, families and others who dispute this harsh judgment and believe the communication of these individuals is their “true voice.” Take a look at the different films and decide for yourselves which seems more logical- a mistaken autistic person not understanding his own disability, or a potentially mistaken professional.

To gain an insider’s POV into autism, please consider reading my books, In Two Worlds and Ido in Autismland.
Thank you for visiting my blog.
Ido

The Ability to Communicate Creates Autism Advocates

In this video is a friend I have mentioned in previous essays. He has also posted here as a guest author. He is a few years younger than me and we have known each other many years. Our moms are friends and talk to each other about autism (what else?). His name is Dillan Barmache.

Dillan is going to my old high school and he is going to graduate with a diploma in a year. Then he will take on the world.

He has been infected by the same bug I have been — a need to educate and change the way professionals look at our type of autism. I am proud to share his presentation at Stanford University to medical professionals.

His message is identical to mine. Open your minds. Let us out of our prisons.

I’m thrilled to see so many people with autism be heard, be advocates and educate.

Autism in France

The post you will read by guest bloggers, Laurence Le Blet and Karen Hatungimana, and a linked essay by Nicolas Joncour, are about the situation for nonverbal autistic people in France currently. I was unpleasantly surprised to learn how behind France is in educating people who have autism or in supporting children and families. I have many complaints about the system here in my own community but I know that I have been very lucky too. While an unwelcoming school or an incompetent aide has been part of my experience and has negatively impacted me, it has not been my entire experience. The opportunities I have been given to get a normal education, to have a trained aide with me in school, to have the chance to get a college degree and even to become an advocate for people with autism has been a blessing I cannot take for granted. It is time to change the paradigm about autism in France.

“The Right to an Education”, Article Typed by Non-Verbal Autistic Piano Student with Dyspraxia


Guest Post

by Laurence Le Blet and Karen Hatungimana

The situation in France for autistic people has progressed very little for many years. The professional orientation of case-managing organizations, medical-social institutions and specialist doctors is still largely psychoanalytic. The National Health Authority, (HAS), does not recommend psychoanalysis, and specifically condemns the “ le packing” treatment (in which a patient, wearing only underclothes, or naked in the case of small children, is wrapped in towels and soaked in cold water for the stated goal of enabling the child to rid himself of “pathological defense mechanisms.”

Image result for le packing autism

Despite these recommendations, these treatments remain widely present and the national institutions have not caught up with new recommendations for autism treatment. These archaic and outmoded approaches are found in all institutions: justice, health, schools and in society in general. In fact, societal ignorance regarding autism is so pervasive that reports made on parents and subsequent social placements are many; children are always at risk of being removed from their parents custody.

Although autism has been officially recognized as a disability since 1996, the training of nurses and special educators is still mostly based on psychoanalysis and autism is widely seen as a psychosis. Consequently, children with autism are not encouraged to attend regular schools with their same age peers. Despite the legislative Act of 11 February 2005 on Equal Rights and Opportunities, Participation and Citizenship of Persons with Disabilities, the educational situation for autistic children has barely changed. Only 20% of autistic people are enrolled in regular schools, mostly not full time, and parents have to fight for their children to be and remain in ordinary primary school. Most autistic kids are referred to medical educational institutes or day care hospitals at a very early age (from kindergarten), where the right to schooling and the ability to participate in society is limited. Medical-educational institutes and day hospitals are supervised by the Ministry of Social Affairs and the Ministry of Health )

Another factor negatively affecting the ability of autistic children to attend regular school is due to the fact that many children do not have the necessary trained support. Children may wait a long time to obtain a personal assistant and until then, must remain at home. However, many assistants are not adequately trained nor do they have a good understanding about autism. Additionally, most schoolteachers believe that students with autism suffer when they attend a regular school and they believe the child should be removed from the school and referred to specialized institutions. When parents are not well informed of their child’s potential to learn, as well as their basic rights, (and most of the parents are not), they are pressured to enroll their kids in medical-social institutes. Those parents who believe in their kid’s potential and capabilities are accused of making their child suffer in a regular school, or are told that his presence in a regular school makes the teacher and other students suffer. Thus inclusion is strongly discouraged. There have been a few lawsuits by parents, however this is rare.

There is a lack of understanding of integration and inclusion concepts. Parents of children with autism who strive for inclusion have to overcome innumerable obstacles including: delayed or obsolete diagnosis, absence of proper care advice, fighting for financial support, and most significantly, the permanent anxiety of the psychiatric hospitalization of their children after their death because nobody would be there anymore to fight for them.

The Committee on the Rights of the Child (UNO) has issued its conclusions on the implementation of the Convention on the Rights of the Child.

Here is an excerpt:

The Committee urges the State party to take immediate steps to ensure that the rights of children with autism, , And that these programs are in conformity with the recommendations of the High Authority are authorized and reimbursed. The State party should also ensure that children with autism are not subjected to forced institutionalization or administrative placement and that the parents are no longer subjected to reprisals when refusing the institutionalization of their children. “

In France, despite there being laws and recommendations for good autism treatment, most are not widely known and they are not consistently implemented throughout society. Money that is designated to medical-social institutions would be better applied to education. Inclusion should be effective throughout the entire life of a person with autism.

France ‘s motto « liberté , egalité , fraternité »  should be for all.

Image result for france

 

 

Tips for Parents: Creating Resources and Educational Opportunities for Students with Autism who Type

Guest post by Tracy Kedar

I have been asked many times by parents how to develop resources to support their children with autism who communicate by typing in order to access a regular education, or how to find supportive agencies or how to create other services where they live. I wish there was an easy answer. Each resource we have out here took legwork and advocacy work by someone, as I’m sure so many of you have already experienced and accomplished, and we have a long way to go! Based on the kinds of questions I often receive, what I can offer are some tips  that hopefully will help parents in developing resources where  they live.

School:

The general education system is still not set up for typers. By and large, unless you encounter an extremely rare and open-minded individual in your school, or others have blazed the trail before you, you will virtually never walk into a school that is familiar with autism or ready to integrate autistic students into general education classes Thus, parents are, as always, thrust into the role of advocate for their child and become de facto outreach educators regarding autism to the schools. Since so many special educators have been taught that students with autism have low cognition, parents of autistic children who have broken through the communication barrier and who are trying to get their children into general education, must come to IEP meetings armed with evidence of their child’s ability. Often times those early meetings are emotionally challenging for parents because panels may be biased or even hostile. However, films of their child typing, reports and assessments from private, preferably school-district-recognized, augmentative communication specialists, psychologists, and others, which show their child’s true capacity, may help.

Beyond this, parents may need to be ready to explain that their child has a legal right to be educated, according to federal law, in the least restrictive environment, despite communicating in a different modality and sometimes displaying odd behavior. Since many people have never even heard that a nonverbal autistic person can communicate by typing, parents can help the IEP team by reassuring them that with a trained aide for behavioral support and as a communication partner, autistic people have successfully been integrated into general education and have done well.

With luck, there will be in attendance at the IEP meeting someone from the school who recognizes that the child is truly communicating and who consequently recommends allowing the child to enter regular classes, but this may not be the case. If it seems necessary, parents may want to invite independent professionals to the IEP as well, such as augmentative communication specialists, educational psychologists, and so on, who can help advocate on behalf of your child’s abilities. Though there may be no one in your area specializing in, or even familiar with testing autistic kids who use typing to communicate, just finding someone open-minded may be good enough.

From our own experience, when Ido was young and I was trying to get him out of autism class, I searched for an educational psychologist who was willing to let him be tested while he answered questions via letter board. I found someone who was willing to try. She carefully observed throughout the testing to make sure he was communicating without being manipulated or prompted, however, she had no prior experience testing a child who communicated in this modality. Other parents looking for someone to do an assessment are eager to hear who can do a fair or adequate job and word may spread among parents that this person is capable of testing a nonverbal typer.

Should a school refuse to allow an autistic student to be integrated in spite of educational psychological evaluations and films demonstrating ability and aptitude at age appropriate level, then in some instances parents may be compelled to seek additional support. It is generally better to not have legal professionals (lawyers, paralegals) in the room in the introductory meetings since at that early stage you are trying to educate school personnel and forge a partnership. However, if you determine that it is necessary, it may be helpful to convey that you are consulting with a legal professional and are aware of your child’s legal rights. A lawyer’s presence may be useful in future meetings but is certainly not the place to start as teamwork and a non-adversarial relationship is always best, if possible.

Once a child is out of the autism class and mainstreamed, the student often finds the academics to be an easier hurdle than the learning to sit still and control his body, emotions and impulses all day. Because these are self-control skills, many students begin mainstreaming gradually, perhaps leaving an autism classroom for only a few periods a day until the self-control improves. For example, in Ido’s middle school there was a self-contained autism class where he sat when not in general education classes, though he did independent study there for the other academic classes he was missing. His integration began gradually. In 6th grade he went only to two general education classes, math and science, and as he learned how to function in a regular class he was able to last longer and longer. By 7th grade he was mainstreamed for three classes and by 8th grade the school recommended that he be on a full general education schedule, which he maintained throughout high school.

Another strategy we found useful was to hire a private tutor to work on grade level material not taught in the autism class before Ido was mainstreamed into general education so that he could get used to do doing regular coursework. He was sitting in the remedial autism class at school all day, but we hired a graduate student in education (not special education) with no prior exposure to autism, whose lesson plans no doubt helped ready Ido for general education. Another advantage is that each of these people, formerly unfamiliar with nonverbal autism and typing to communicate, becomes part of a wider network of support and may in turn provide support to other parents and students.

It is important to note that for most of the typers we know, they didn’t walk into a school that had a program ready to mainstream an autistic student. Since Ido was the first mainstreamed, nonverbal autistic student in every school he attended, this was a completely new experience for teachers and administrators. It is important to know that individual people can make a huge difference. We were helped enormously in middle school by an open-minded administrator, an assistant principal, who was willing to work with us and be supportive to Ido in the school setting. As he told me, “I always just assumed he was smart and just communicated in a different way.” By presuming competence he helped forge a path for success. This was a pleasant surprise. We saw how, by his lead, he influenced others in the school to be receptive to having a student with autism in regular classes.

To help smooth out potential obstacles, prior to the beginning of the school year I met with the administrators to explain who Ido was, how he communicated, his abilities and challenges, and I did the same with all of his teachers after contacting them by email. Ido came to these introductions and introduced himself to the teachers. This is an essential step. Many teachers have never met a person with autism before. They may know nothing about autism. They have huge classes and they already feel overwhelmed and harried, so they need to know that they have someone to bring their questions to, whether it’s the parent, aide, administrator or inclusion teacher. With a good collaborative relationship, supportive administrators can help place the child with teachers they know will be the most open and capable. Many teachers rise to the challenge admirably and really embrace educating the student with autism. They are great gifts to our children. Other teachers accept the presence of our kids with no special passion for reaching out. No problem. They educate them and accept them as they do any other student. Each of these teachers becomes a resource for those students with autism who follow.

There are, however, some teachers who are a terrible fit. They may resent the child’s presence, do not know how to deal with autistic behavior including disruptive noises, outbursts or poor impulse control, be poor teachers in general, or they may exhibit hostile skepticism. In certain instances, finding a different teacher may be warranted. Teachers should be encouraged to observe the child communicating and answering questions to put their mind at ease and to reassure them that the student is doing his own work. From our experience, the more independently the child is able to communicate, the more receptive the response. In our experience, the majority of teachers I met were cooperative and some were outstanding. .However, in spite of all your efforts, you may still encounter people in the schools who are less open-minded, or who are convinced a nonverbal, autistic child does not belong in general education. It is never easy being a pioneer, and unfortunately, both parents and the student have to be ready for these challenges and for the difficult people who make the process tougher, whether teacher or administrator.

Parents may find that certain systems are unfixable. When Ido started high school, after a successful middle school experience, he initially went to our local high school hoping to continue his positive experience. This school proved to be a bad fit. A few administrators created a hostile climate for disabled students. Since it is hard enough having autism, no student deserves to be bullied by administrators and made to feel unwelcome at school, in addition to their everyday challenges. I concluded that the administrators of this school were not reasonable or compassionate people who were willing to work with me, but rather, were obstructionist and mean-spirited. I realized that because of this, the environment could not be changed for the better for Ido. I felt that the hostile climate was sufficiently bad that I had to remove him from the school and find another high school with a more welcoming attitude that would be willing to enroll him midyear.

The second nearby high school I found did not have any experience mainstreaming autistic students into the general education classes. Ido was the first. But they had a different attitude of, “let’s try,” “let’s make it work,” and significantly, they had respect for the student. This enabled him to thrive. What happens without planning, then, is that word of mouth spreads among parents to avoid the first school and to look into the second, and so perhaps more typers enroll in the second school and none into the first. But, it is not as if a program of integration, training, or special services for the students with autism existed or exists in that school. Rather, it is a school with some kind people willing to give a student with autism who types a chance to be educated and it becomes an option for parents looking for resources.

One friend of mine was having terrible experiences with a teacher/administrator in her son’s elementary school. The mom is a strong advocate but it became clear that she was dealing with a closed-system, much like Ido’s first high school, which didn’t want things to work out. Staying in schools like this is actually harmful to our kids. She was struggling to cooperate with an individual who had strong negative biases toward her son’s abilities and who would not, and possibly could not, change. As painful as it may be to see people who reject or underestimate our children, sometimes we simply have to recognize a hostile system and not continue to bang our heads against the wall trying to fix things. It becomes essential in these circumstances to look for greener pastures elsewhere. After changing schools, this little boy is now thriving in his new school where he is fully integrated and welcomed. Once again, this life-changing experience was made possible simply thanks to a few open-minded individuals in the new school who his mom reached out to and who were willing to listen and learn and the negative experience was shaped by one powerful individual in the first school.

The bottom line is that a successful general education school experience is created one teacher, one counselor, and one administrator at a time and parents must reach out to all of them. One of our most successful collaborative relationships was with a teacher who initially was skeptical of Ido’s abilities. To her great credit, she came to our home, observed Ido typing and changed from being someone I feared might impede his progress to an indispensable ally and supporter who has since helped other students with autism who type in the school setting. Outreach is incredibly important. Some people are open to change and some are not. One individual, like this wonderful teacher, can help foster a successful experience for your child, and for those who follow, at school by influencing other staff.

Agencies:

Beyond schools, our children get help from autism agencies, which provide their aides, adaptive skills training, and other services. There are only a few agencies in our area that are eager to support kids with autism who type. They do not specialize in this population, though they are interested in exploring it more. They became enthusiastic after they got a client who was a student with autism who typed and who had a parent who educated and advocated to the agency staff or supervisor. 100% of the agency staff did not get behind the concept. Rather, once again, a few individuals got on board. In many instances, these are individuals who have no particular expertise or training in typers or typing to communicate, nor did they know initially how to support the children and their communication. However, significantly, certain individuals on their staff showed a willingness to listen to parents, to observe how the students learned, and finally, an openness to learning more. I know several parents who even trained agency staff who were working with their kids on communication techniques and strategies, planting a seed of interest and helping their own children as well. Once again, parent led and parent generated advocacy coupled with a few open-minded individuals in an agency, can begin to make a systemic change. Families that follow will enter into an agency that is more receptive, thanks to the efforts of these motivated parents. I will confess that I stayed on far too long with an agency that had a very inconsistent ability to support Ido. I urge you not to make the same mistake!

Other Resources:

As you look for the supports your child needs, it may take some time to find the right match. When we wanted someone to help Ido with fitness, he worked with three trainers over the span of a few years. The first did a very good job but had no interest in specializing in autism and moved on to other things. Still, he was able to help Ido with fitness and it was a positive experience for both. The trainer who followed him was clearly not excited about trying to help a person with autism get fit, so the search continued. We found Ido’s third trainer, Mike Ramirez, through a friend, a mother of a child with autism. She said Mike had worked with her son through an autism agency for years but on a personal level was a Cross-Fit devotee and fitness buff. For Mike, putting these two hats together, autism and fitness, was ideal and he decided that what he wanted to do professionally was to concentrate on the fitness of kids with special needs. Ultimately, he created his own company to do so. What I am saying is that if no Mike exists where you are now, remember, Mike’s program didn’t exist here either when we started! Ido was the first kid he trained, but from word of mouth other parents began to request a service that he was good at and interested in providing. As Mike says, his services are parent driven and the parents, in many instances, are driven by the demands of their kids who type. Once our kids can communicate, they can tell us what they want to learn and then motivation is much higher.

Whether the person is a tutor, a running coach, a fitness trainer, a piano teacher, an art teacher or any of the many talented professionals who may not have originally been familiar with autism, or who may be familiar with autism but never thought to teach these particular skills, resources can be created for your children and community in this way. Once our kids type they can let us know what they want or need.

Networking:

Finally, finding like-minded parents is crucial. I can’t begin to list the good tips I got from other parents and hope that I have been able to do the same for them.

Creating options, advocating and being brave pioneers walking into the unknown is what the reality is for those of us now on the forefront of creating educational opportunities for our kids with autism who type. Our children bravely walk into the classroom ready to take on those opportunities in spite of the challenges they face, but change is still one child, one parent and one educator at a time. One by one, with each person forging a path for those who follow, we can move mountains.

Good luck to all pioneers!

 

Paving the Path by guest blogger, Dillan Barmache

Dillan and Ido

Dillan and Ido

Ido has been a figure of importance for those of us on a journey to find our voices. I have known him a long time, and he has given me advice, hope and footsteps to follow in my time as a communicator. I don’t know if I would have had the same success now that I have achieved in my struggle against silence without him to forge a path before us. I would like to think I could have, and I wonder how much it must have been so frightening to make those paths without his own guide ahead. Ido gave me a lot when he had so many of his own trials to face. We all have to fight so hard to beat autism, a school system that doesn’t know what to do with us, and expert behaviorists who denounce our accomplishments as a hoax. Ido still found it in himself to take the time to help me in this struggle, and he even wrote to me in his book. I hope a younger version of me can look at my story and I can do for him what Ido has done for me.

The process of bringing true education to people with autism is as complex as the condition itself. In my school, Ido was first down that road, and I was able to look at his experience and know the challenges ahead and what mistakes to avoid. And further down the road, the next student will be able to refine the process. We keep building and learning how to learn. There will never be a perfect way, and that is good. Always adapting is the perfect way, and Ido began that all in my school. It is most important to be open to knowing that there are undiscovered modes of learning. Already many teachers are fixed in their ways and unwilling to admit to a need for change. Our presence in the classroom will show them an example they cannot ignore. I am grateful to Ido for being the first of hopefully many.

Living in the Past

I hear from many people from different countries regarding autism. As bad as I feel about our understanding of autism here in the US and how hard it remains for so many people, I now understand how much worse it is in other countries. My life has been liberated by communication. I have many challenges, but also opportunities. Most significantly, my school district allowed me to be educated in regular classes once I proved my intelligence by typing on a letter board. Now my improved skills in handwriting and typing on an iPad are making my life easier still, but I have a long way to go.

Many times I feel down and I realize how hard it is to overcome my body, but I also know I am improving and I practice motor issues daily to work on my mind body connection. But the letters I receive  tell me how it is in other countries where autism treatment is stuck in the 1950s where belief in “refrigerator mothers” causing autism and treatment by psychotherapy still rule. This is in developed countries, mind you.

How do they treat polio? Do they still use iron lungs or do they immunize? It’s inhumane. If you live in France, or other countries treating autism this way or in other outmoded ways, please share your experiences with me.

But I also know that some countries are stuck even further in the past, in the 19th century, Victorian asylum mode. I need to help change things. How do you think we can do it?

Thoughts on a Tough Senior Year

I graduated high school on June 5 with a diploma. My GPA was the fourth highest in my grade. I did it despite being really autistic. I did it though I get tense and even aggressive sometimes. I did it though I can’t speak verbally and communicate by iPad or letter board.

I can’t stop being autistic. It is with me all the time. I’m wired in a peculiar neurological way. Despite this, I thrived, taking AP and Honors classes and doing my work along with my normal peers. The school was great and worked like a team. My teachers were supportive and respectful and I am grateful.

My last year suffered because of a crisis in 1:1 support. This nearly turned me into another person, I was so stressed and overwhelmed by the situation. But I can smile again and I will put it behind me and move on.

Because autism makes us so reliant on our 1:1 support, when it’s strong we can flourish. If it’s not, we can collapse. Now that I have graduated, I will have more power to choose who helps me so I need never be trapped again with a bad match and bad leadership.

Thanks to all my teachers, the school administrators, Adrienne and Anna.

ido_graduation_post

Having More Say in Our Lives

My hope is that one day autistic people will be taught to communicate as young as possible. It certainly would be interesting to see how life would be if instead of drills and remedial lessons kids got lessons in age appropriate lessons, typing for communication and exercise specifically to awaken the mind/body connection. In my opinion, it is likely that the severe autism symptoms might be lessened because the urge to escape a frustrating reality will be less intense. One day I hope to put my ideas into a program for other people with autism. It will be the world’s first program for people with autism run by a person with autism.

Isn’t that pathetic?

How many autism organizations have people with autism consulting them or on their boards? If inclusion and diversity are important, why do so many autism experts fail to consult people who have autism? If I had an organization for blind people, I think consulting with people who are blind would be valuable. If I had an organization for people in wheelchairs, I think understanding their experiences would make treatment better suited to real needs. Must those of us with neurological issues be isolated from our own treatment options? My hope is to change this discriminatory practice.

Out of the Closet

 

Every day I meet new communicators. Not babies, but kids in elementary school, teens and young adults. Their lives had been limited in one way communication for way too many years. They listened but they had no way to answer. In any case, they heard people. Many of them heard their parents moan and groan and say comments like, “I don’t know how much intelligence is there. I don’t think he understands much.” They listened to their teachers say things like, “He isn’t aware of right from wrong. He isn’t aware of his surroundings. He is oppositional today.” They listened to ABA specialists tell them, “No, try again,” “No, try again,” “No, try again,” and “High five. Good job.” They heard a world that thought they were dumb. But the world in this case was wrong.

It isn’t a lack of intelligence to be able to think but to not be able to get your body to show it. It is being trapped. If I put your hands into baseball mitts and your tongue was trapped in gooey sludge and couldn’t move right and I bombarded you with questions, I think you would agree you would have a hard time showing that you had an intact mind, especially if those baseball mitt hands moved differently to your thoughts and wishes sometimes, and everyone assumed that people with sludge tongues and baseball mitt hands were intellectually low.

I know the way to escape this isolation is not to tell sludge tongues and baseball mitt hands to move in ways they can’t. It is to teach those hands to point to letters, to type with one finger and to communicate. There is now a steady tide of people, once thought to be dumb, once thought to need baby lessons and baby talk who are mastering communication on letter board and typing. And voila! Not dumb!

More than anything they find relief being recognized as intelligent. And some find even more; a mission, friendship, a life of meaning. But none will go back into the closet of silence.

I wonder if you are a parent, teacher or professional and you have seen a “dumb” kid prove himself smart, how do you react with other kids? How long should they wait for you?