Category Archives: professionals

The Autism Experience Challenge

You work with autistic people.
You have an autistic relative.
You are adventurous and into new experiences.

If you fall into any of these groups, my Autism Experience Challenge is for you.
Of course, I specifically invite the participation of the experts of ASHA and other organizations that have so strongly made statements about the inner experiences of nonspeakers, yet have never experienced the state of being nonspeaking themselves. Certainly, to claim to have an understanding into nonspeakers, it helps to walk in their shoes- even if just briefly, to avoid the appearance of presumptuousness.

If you are brave, let’s give it a go.

Step 1

Mark out a period of time- anywhere from 3 hours for a shortened version to 3 days for the fuller experience. You will not be allowed to speak verbally during this time, no matter how much you want to.
You must designate this time to take place when you will be around people. There is no benefit to this exercise if you will be alone the whole time. Your friends and relatives should know what you are doing prior to the exercise so they aren’t worried and can do their part in the challenge.

To be authentically true to the autistic experience I need to deny you alternative means of communication. You cannot gesture, point, write, type or show ideas on your face. To have an authentic experience, people will have to guess your needs and wants. Maybe their guesses will be wrong.
You cannot correct them. You must live with the results of their guesses.

To experience this kind of frustration and loneliness is important. You must eat with people and be physically together with people but you cannot join in their conversation at all.
You are near others, and may lean on them or hug them, but you are not part of the social interaction.

Step 2

Some of you may be ready to quit right here, but for those ready to forge on, let’s make it a bit harder.
You can start this any time by prearrangement.
Ask your friends or relatives to discuss you, your behavior and difficulties, in front of you, as if you don’t understand. They can say whatever they want, whether true or outlandishly wrong, and you can’t correct them. You must stay silent. No gestures or facial responses are permitted to show your feelings.

You should take note of how you feel.

Step 3

Every time you feel upset, maybe, for example, after hearing people discuss your behavior, or you feel excited, or perhaps bored, you must flap your hands, stomp your feet or jump up and down. These responses should begin after approximately five or more hours of just experiencing living in silence.
Tell your friends or relatives to respond each time you flap, stomp or jump with any of the following types of phrases:
All done
Hands down
Hands quiet
or
Quiet hands
No jump
Feet quiet.

Step 4

After a minimum of 6 hours, your friends or relatives should begin, at a prearranged time, to talk to you in ABA English. That is, no more normal speech aimed directly to you.
They may speak normally near you when talking to each other in lively and interesting conversations and you may listen but not participate in any way in those conversations. They may speak about you in normal speech.
But if someone speaks directly to you it must now be in simplified speech and command oriented.
Wash hands
Go car
All done
Turn off

Etc.

No articles or grammar for you! This must continue until the challenge ends.

Step 5 (for the very daring, only)

I can’t induce sensory highs but I can help you simulate overloaded or intoxicated senses. Prior to the challenge, you can make a recording of intermittent noises, such as a leaf blower, a siren, a baby crying, and listen to these through headphones while you walk through a crowded mall or market. The sounds pop up randomly and unexpectedly. Several may occur in succession, or you may have none for many minutes. They can be quite loud. They may be very brief or last for several minutes.

Remember, you still can’t talk, gesture, communicate your ideas, discomfort or feelings. You can cover your ears, flap your hands or jump in public.
I grant you temporary permission.
You will be aware of the stares.

When you get home, stare at a lava lamp or another interesting undulating visual pattern for about ten minutes. Allow yourself to get intoxicated by it.
You may remove the headphones while you do that.

Step 6

Point to letters, very slowly, on a letterboard, keyboard or tablet to communicate your thoughts to someone for your final half hour of the Challenge.

Step 7

Go back to normal and think about your experiences.

In this Autism Experience Challenge I do assume that like me, and so many others with nonspeaking autism, you understand words and that the trap is your motor system.

How long could you tolerate it? Did you have to stop early? What were the hardest aspects? What new insights did you gain?

Step 8

Now for your final challenge:

Imagine your whole life like this.
Imagine never being given a means to communicate.
Imagine experts speaking out, denying your rights and invalidating your potential.
Imagine being talked to like a child.
Imagine breaking through this and then hearing experts say that what you communicate are actually someone else’s thoughts.

I invite my readers to try my Autism Experience Challenge. Let me know how it goes.

Helping the Do-Gooders

 

Twice recently when I have been out grocery shopping with my dad, while waiting to pay the cashier, he, not me,  has been approached by a do-gooder who tells him that she has a program for people like me. He says thanks, but no thanks.

They tell him it is good to get me out in the community like this and they talk to him as if I’m not there and not understanding the conversation. He tries to escape quickly, for both our sakes.

They mean well. I get that, but they occupy the traditional, patronizing, benevolent model of disabled outreach and education. They must rescue me.

No thanks, ladies.

Do they walk up to a guy in a wheelchair, ignore him, and tell his companion they have a program for him and how great they are for bringing him into the community? That would be pretty funny if they wanted a lawsuit, but lucky for them, I’m not speaking and that gives them the freedom to assume I’m just like all their other charges– which may actually be true, just not in the way they think.

 

Spectrum or Different?

Autism Spectrum Disorder is pretty broad. I met a young woman today who has been diagnosed with Autism Spectrum Disorder. She seemed totally like every other neurologically normal person I’ve met in terms of motor, speech and social skills. Maybe I’m missing something she suffers from, but why on earth do we have the same diagnosis?

If I get a paper cut and you amputate your leg, people don’t say we have a Laceration Spectrum issue. But it’s worse with autism because autism is so many different issues lumped under a huge umbrella.

I have written my opinion previously that I believe that my autism and Asperger’s Syndrome are different neurological conditions with the same name. This confuses people. Temple Grandin is unable to read people, thinks visually, speaks, and needs no 1:1 support to get on with her life. I am her opposite. I have great insight into people, think in words, can’t speak to save my life, and need 1:1 help.

Somehow the brilliant minds looking into autism haven’t noticed that the opposite symptoms might be different conditions, not a spectrum. Her condition may primarily be a neurological difficulty reading people while mine is primarily a mind/motor disconnect, though both of us may have problems of self-regulation and sensory challenges.

Would it make sense to call a heart problem and asthma a spectrum disorder because they both lead to shortness of breath? Not possible because doctors identify heart issues and lung issues medically. Brain issues are the most unknown, so doctors look only to the external behavior. That’s observational, not medical.

Temple Grandin has poor eye contact. Me too. She talked late. Me too—to the point of still not talking. She has some things similar to me, but they are superficial similarities, in my opinion. So, I have decided to help out the professionals. I am happy to abandon the diagnosis of autism and give it to Temple Grandin and those with similar symptoms since it really isn’t the most helpful term to give people an insight into my medical problem. In fact, maybe we can have a contest to come up with a new name for my kind of autism. I have a few ideas:

Severe Motor Dyspraxia

Mind/Motor Communication Linkage Disorder

 Self-Regulatory Motor Control Disorder

You get the idea, no? Maybe a new name would lead to a better understanding and treatment of this neurological condition.

 

Some Thoughts to a Thought Provoking Post

This post from Emma’s Hope Book blog indicates the stress of parents by a system that makes it harder for them to relate to their child. In my opinion, the list of symptoms reduces people to behaviors and makes it harder to see the person’s personhood. It is ironic because a symptom of autism is to play with part of a toy, but what about professionals who focus on part of a person? If I liked to look at letters it was bad. If they like to look at only symptoms, it’s treatment. This is hard on parents because, “Hands down,” “Hands quiet,” and on and on, become the key of interacting.

I remember hugging my mom when I was young and an expert remarked, “Wow, he sure stims on you a lot.” So in the symptom-based worldview even hugging my mom was a sign of my inability. Of course, if I didn’t hug I would have been declared distant and disinterested in people. Experts should be really wary of assuming they know, when they really don’t know yet, what is in the heads of severely autistic kids. In these cases it is like putting words into someone’s mouth–all ten of them.

The point Ariane makes of seeing the child less pathologized is spot on. Let’s listen to people with autism who can communicate to be partners, guides, teachers, role models and proof that though we may look or act autistic because of having autism, we are fully human, fully intelligent and deserving of peoples’ respect.

On Education and Communication; A Message to Parents, Professionals and People with Autism

School is finished at last. The year was tough but I learned a lot. I read great literature. I loved US history and understand my wonderful nation better. Chemistry was fascinating too. Learning how our universe is composed is thrilling to me. Me gusta aprender español también. I learned a lot about math and animal science too. All this is thanks to my index finger and typing my thoughts.

I have the desire to pursue a college degree. One more year of high school and this dream will be a reality. Over spring break I visited many colleges with my parents. It will be different than all day, every day, of high school in one place going room to room. But I will have the opportunity to get more education in biology, neuroscience and other fields, and maybe I can help improve our understanding of autism in more ways.

I push myself to get good grades. It matters to me that my grades show my intelligence. My teachers were great. They pretty easily adjusted to my mode of communication and welcomed me warmly. My life is so rich now. I have friends in school. I love to go.

My message is to parents who wonder if their child can learn. Only the most determined parents will find out. If you are working with experts like those from my early life, they limit your child in low expectations. They tell you that being impaired in body is being impaired in mind. They let you work on skills that barely progress and tell you that your child isn’t advanced enough to write.

If you keep on listening to them they will keep low expectations for a lifetime. I know it is hard to be the parent who disagrees. I watched my mom try to deal with my ABA team when I began to communicate at seven. I have  watched our friends fight school district attitudes. They went through a big hard slog. They also got their kids typing and into general education. More than anything else, the parents believed in the possibility that their child had more in them than they were told. Parents, you have to trust your guts. You see your kid all day in real life. They see a drill or a lesson, and these moments where the motor issues of severe autism are at their worst.

Professionals, I have a message for you too. I used to think you were all clueless and control freaks. This is not to say that people were not warm or kind because I liked my clueless teachers as people but resented their attitude of certainty. If you work with autism, be prepared to accept that a degree in psychology or sociology or speech pathology or occupational therapy isn’t giving an insight into more than symptoms. My brain and how it’s impaired is a guessing game, even for neurologists, so I think the certainty that many practitioners have when it comes to autism is really puzzling. Being open-minded and admitting that the brain is vast and mysterious is required, in my opinion, by anyone who works with severely autistic people.

Now I have a message for people with autism who can’t yet communicate, and I ask parents to read my essay to their kids, Have hope. More than anything, have determination. Life outside your head and stims is really worth striving for. I believe soon there will be too many people with autism who type to keep insisting we are one in a million. I am fighting for your freedom and so are others. Hang in there.