Diagnosis Disruption: Debunking the Myths of Non-verbal Autism

Autistic individuals are the true autism experts. Matthew Lager’s TASH Talk debunking the myths of non-verbal autism is a must read for anyone who has an autistic child or works with autistic individuals. Matthew uses a letterboard and keyboard to spell to communicate. He prepared this presentation for the 2016 TASH conference with his mother over a several weeks. Due to the 10 minute time limit of the TASH Talk, Matthew’s speech was read aloud for the presentation with spelling closing remarks live. Matthew’s goal is to challenge people to rethink autism and understand the capabilities of people who have been labeled as “low functioning”.  ~Elizabeth & Matthew  

Matthew

Thanks for letting me speak today. Thanks to TASH for including me and for your commitment to advocating for an easily dismissed segment of society.

I am going to share my experience of being erroneously mislabeled as low functioning and of low intelligence. My story is representative of thousands of others labeled as low functioning. My life changed in ways most can not comprehend the summer of 2014 when my parents took me to Herndon, Virginia to see Elizabeth Vosseller. My hero, Elizabeth, introduced me to the letterboards. Through a letterboard and now keyboard I am able to communicate my true thoughts by spelling them one finger at a time.  I wrote this presentation on a key board tapping the letters one at a time.

The topic of my talk is:  Diagnosis Disruption: Debunking the myths of non-verbal autism.

Many people view me as being stupid, emotionless and without the ability to understand other people’s feelings. It is not a surprise because scientists describe autistics so inaccurately. I am here to tell you we are much more complex than you believe and also more ordinary than you realize. We are confusing and difficult to understand because our exterior doesn’t match our fully intact brain.  We have sensory problems that make us look out of control. Some of us have voices that don’t say what we mean. Others have motor planning impulse control issues that make us do things we didn’t mean to do.  In spite of the tremendous challenges we are all just like you with complex thoughts and feelings.

Scientists typically look at three key areas when determining whether someone fits the criteria for further screening for autism spectrum disorder.  The three areas are impaired social interaction, impaired communication and restricted or repetitive behavior.  They often assume that functional problems of speech, social interaction and unusual behavior are indicative of low intelligence and poor cognitive function. They create checklists to define the behavior we do that is not typical without understanding that many of these behaviors are in fact motor based rather than a cognitive deficit.

At my previous school, I was not allowed to spell to communicate and therefore was unable to change their incorrect assumptions of me.  They were unable to see beyond my atypical behavior. As a result, I was taught at the first grade level last year.  My new school was open to seeing me differently and allowing me to use the letterboard all day.  I am now taught at grade level which is eight grades higher than instruction at my previous schools. I wish they could see me today and perhaps treat others with so called low functioning autism differently.  This school move only occurred when a group of experts in the school system were willing to suspend their preconceived ideas about autism. I hope you are willing to do this also by hearing what my friends who are here and I have to say.

I am going to ask you to look at a few more examples from my perspective.

While on the surface these scientific descriptions seem accurate, I am going to describe how what you see in many autistics is not the full or true picture.

1)  Wild erratic movements without purpose: When I look most dysregulated I am reacting to overstimulation and sensory overflow. It is impossible for anyone to evaluate my internal state when just looking at my out of control body. For example I become very dysregulated, cover my ears and make an odd sounding noise when people sing happy birthday.  The out of tune singing, especially my mom’s voice (just kidding mom), makes me feel anxious and covering my ears and making noise muffles the sound. When people see my reaction they assume I don’t want to be part of the celebration and stop including me when in fact I love birthdays and just need a coping mechanism to participate.  When I appear totally out of control, I am internally trying to focus and calm myself during an overly sensory stimulated situation.

2) Inability to initiate or sustain a conversation: Experts claim low functioning autistics are unable to hold a conversation. It is true that I am unable to do it verbally. However I can have full and meaningful conversations with my friends and others if I am able to type my part of the discussion.  I have three friends in the room today who communicate the same way I do.  I wish scientists or disbelievers would watch our interactions and see firsthand the complexity of our discussions, the way we support each other and how emotionally connected we are to each other and the world.  One of my friends dreams of being a writer. Another really wants a girlfriend.  All are interested in a full life with the same opportunities for education, living arrangements, jobs and community that any other person wants.

3) Odd, repetitive behavior: My behavior that experts describe as repetitive and without purpose is actually very useful in calming a highly stressful situation. For example, I often ask repetitive questions when I am nervous about a transition or don’t know how to get the words I want to say out of my mouth.  I understand why experts think these behaviors are odd but understanding the reason we do them is crucial to understanding us.  A good example of this is my obsession with the Wiggles. I talk about them all the time but can’t stand them. As annoying as it is to be 15 and talking about a preschool music group, reciting their lyrics does calm me down when I am stressed.

4) Poorly developed imaginary play: I have been told those with autism have no imaginary play skills. If only someone could get inside my brain you would see how I am always creating stories to pass the time when I am being ignored. I create stories about people traveling around the world and meeting famous historical figures. One of my favorites is of my friends going to meet Abraham Lincoln and talking to him about emancipation of those in society who are disenfranchised. So, I will continue to fail the tests researchers use, like putting plastic figures in front of me and asking me to pretend some contrived story.  However, when I see the figures I’ll pretend in my mind the figures are Lincoln’s soldiers who may have lost this one battle but can still win the war.

5) No or limited interest in social interaction: I understand why someone thinks I’m a loner and prefer isolation. However this could not be further from the truth. In social situations I sometimes leave the room when others are trying to interact with me because i am so excited and my body experiences a rush of such intense happiness that I launch like a rocket out of the room.  When I come back unfortunately the social interaction is lost and even worse than losing that one opportunity I likely pushed the person away for good.  This is one of many examples of how my outward behavior doesn’t match my strong insatiable need to be with others and how researchers don’t understand me. I want friends more than anything. I am lucky that now for the first time I have a group of people who I feel close to and who I feel understand this.

Every time someone with autism is allowed to share what goes on in his mind it gives experts more information and insight into the complicated inner workings of those of us who are so misunderstood. Hearing from Autistic individuals is integral to scientists understanding us and our critical and empathetic thoughts. By doing so, they can study the huge gap between the vast amount of intelligent, intricate, and inventive thoughts that we have in our minds and our difficulty sharing them in a typical way.

In closing so called experts need to start by assuming that their patients with autism are truly thoughtful and intelligent. Entering the patient/clinician relationship with this shift in thinking is the most important first step. Allowing us alternative forms of communication combined with researchers commitment, dedication and hard work we can actually make changes to research protocols that will make a difference in my life and others like me.

So, death to the idea of the empty headed autistic. I hope that people will see me and my friends beyond our exterior and see us for the people we really are.

**Note: we had blue tooth connection issues with the keyboard during the presentation resulting in repeated letters.  We edited the additional letters below for readability. 

I am happy to be here and have a chance to tell our story. Please spread the word and let others know.

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21 thoughts on “Diagnosis Disruption: Debunking the Myths of Non-verbal Autism

  1. Hi Matthew- Thank you for sharing your insight and experiences. I work with parents and schools. Often we find the emphasis is on stopping or modifying behavior by behavior modification techniques rather than understanding the unique neurodiversity of the child we are working with. Have you had any experience with this type of therapy when you were younger? Can you tell me what that was like? My goal is to understand and move through how an individual processes an experience or environment. I often wonder if students are bored because their communication differences are interpreted as a lack of comprehension, so they are often segregated away from their peers.

  2. Thank you Matthew for your presentation. I have a 10 1/2 year old son who is completely nonverbal. I have advocated for him for years to be included in mainstream classes, especially math. I have told them that you don’t know what he is learning and retaining, by him not being in those classes he had no way of learning the material by not being exposed to it. Last spring be started being included in the instructional part of the math lesson. Last year we had a lot of problems for a lot of reasons at school, this year he has meds that better help his seizures, a great case manager at school and his service dog goes to school with him everyday. It has been a great year. He does have an AAC device but prefers to not use it. He also has a tablet in every class since he has gone motor problems. I know he is intelligent and will better communicate with us when he can.

    • Hi Carmen! Thank you for your comment. We love that you have been such a strong advocate to have your son included. It is so critical that our kids are given the opportunity to participate in meaningful education. We teach kids with motor difficulties how to communicate via spelling which may be very helpful for your son. We see both local and long distance clients, so please let us know if you would like to visit us. In the mean time, keep up the great advocacy!

  3. Pingback: Debunking Autism Myths - ita chicago

  4. Pingback: Autism Epidemic, betrayal of the ‘different’ for profit. | finolamoss

  5. This is the thing – I KNOW my non verbal autistic grandson is very intelligent because he has made it obvious. His wonderful mom is working with him and encouraging him to use letters to communicate and I can hardly wait until we can Text or email each other! I’ve been waiting so long to have a conversation with the bright young man I know is in there! Bless you, Matthew for giving this talk!

  6. I can’t tell you how excited I was to read this! My thoughts exactly! Reframe Your Thinking Around Autism! Thank you for this. It is excellent. It needed to be said and you said it so well. I will share it wide and far!

  7. Hi Carmen, that was great! I hope you can do a TED talk and inform more people!!
    I offer workshops around the US for parents with children on the Autism spectrum, and teach ways to release anxiety and addictive behaviors. To read your speech was so enlightened and will have an effect on how I think of Autism now.
    I was diagnosed with ASD last year . . . at the ripe old age of 58 🙂 It totally explained the “why” of my past full of violence and abuse, AND social blindness.
    It helped me to muster up some compassion for . . . me 🙂
    Your speech helps me feel more compassion for . . . you. 🙂
    Thank you!

  8. Loved your article, could I please ask your advice? I’m a proud mom of twins in the spectrum, one non-verbal, 8 years old. I know he’s super smart, and a bright kid, but he refuses to hold pen or pencil at school. Teachers think he can’t function and “not smart”, please, how can I help him, letterboard? Thanks in advance ❤ ❤ ❤

  9. Matthew is not non-verbal; he is non-speaking, big difference. Being verbal means being connected to language, which is symbolic, rule based and shared commonly by members of the same group, community or country. Being non-verbal means NOT being connected to language or its symbols; having no understanding of symbolic language. So, really whether a person is verbal or non-verbal is a question of what and how much a person understands spoken (and for some, written) language and Matthew clearly is high functioning in this regard. That for whatever reason he can’t speak is a technological problem to solve, in this case, typing does it for him. Regardless, his viewpoint is interesting and informative.

    • Hi Linda. Thank you for your comments. I agree with you that Matthew is not nonverbal. Nonverbal means, literally, from Latin, without words. Since words are language and Matthew’s language skills are intact (as is the case with all of our clients who spell to communicate) nonspeaking is a far better term. At Growing Kids Therapy Center, use the term nonspeaking but I believe that Matthew purposefully chose the term nonverbal since this is part of the myth he is trying to address. I will definitely check in with him about that. Matthew does also speak, but cannot speak reliably enough to communicate in the way he is able to on the letterboards. He will sometimes use speech to express a simple request or comment but more often, his speech is repetitive and scripted. He is able to communicate openly and autonomously on the letterboards and keyboard. We do avoid terms like high or low functioning as these terms are not an adequate reflection of our students’ abilities and often lead people to false ideas about our students’ ability to learn and communicate. We are so glad that you found Matthew’s presentation informative! ~Elizabeth

  10. Pingback: Diagnosis Disruption: Debunking the Myths of Non-verbal Autism | growingkidstherapy | Create & Be Well

  11. Pingback: Diagnosis Disruption: Debunking the Myths of Non-verbal Autism | growingkidstherapy – autisticagainstantivaxxers

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