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Autism Interview #112 Part 2: Maxine Share on Assuming Competence of Those with High Support Needs

Maxine Share is a Canadian writer, advocate, workshop creator, and presenter working hard to try to change understanding so that we can change the actions of those working and living with people on the spectrum. Last week, she shared her diagnosis story, discussed her work as an autism consultant, and offered recommendations for supporting autistic children in the classroom. In Part Two of her interview, Maxine discusses how many overlook the strengths of those with high support needs, and some fundamental “musts” for raising children with a positive autistic identity.

In one of your Mighty articles, you stated, “Society’s attitude can be summarized like this: if you are considered ‘low functioning,’ we couldn’t care less about your strengths. If you are considered ‘high functioning,’ we couldn’t care less about your needs.” In your experience, in what ways have the strengths of those considered ‘low functioning’ been overlooked?

One of the most wrenching realities in the autism world is the number of children, teens and young adults who have never been taught to be fluent in a communication method. I wish I could tell you why this is. What I do know is that the onus for not learning is often placed on the vulnerable autistic child, not on the professionals. I have heard from professionals that the child wasn’t interested, refused to engage, would run, would stim, would lash out…but never, ever did I hear: ‘Let’s try another way, because it is so important to find what will work for this child.’

Society has never given non-speaking, “severely autistic” people the respect and consideration they should have as human beings. In the past, many societies would lock them away in institutions where they were often abused and neglected. Today, support and understanding continue to be lacking in schools and in the community at large, and many families care for their high support needs autistic children at home, but are given few resources to help them out.

As described, since so few are ever taught how to use communication tools, they are deprived of the most basic human desire to share thoughts, feelings and needs. Schools do not have the ability to tap into the potential of these individuals, and so potential strengths and abilities often do not have a chance to develop.

We really must always assume competence when working with or raising non-speaking autistic children.

In 2015, I helped organize and presented at the Autism Rocks two-day symposium just outside Toronto, Ontario. We had a two-part session on Communication. I delivered on Communication Challenges in Verbal Autism. The first two hours of the morning, however, belonged to two dynamic non-speaking presenters — both young teens. One had very high support needs and was accompanied by two specialized respite workers and a parent. Using an iPad to communicate with us, presenters Adam Wolfond and Emma Zurcher-Long opened the minds and hearts of the approximately 120 people in attendance. They responded to questions with thoughtful, insightful answers. Those in the audience could never ‘unsee’ what they had witnessed. The inability to communicate with verbal language had nothing to do with the inherent intelligence of these two young people.

This is the sad truth, though: we do not measure intelligence in those who cannot communicate with spoken word. We don’t, and so schools conclude that they lack cognitive ability — though anyone who works in this field can tell you that many non-speaking people are interested, intelligent, and curious. It has always struck me as so irrational to measure those who cannot communicate with spoken word, or who cannot control their motor movements, by how well they can manage with a typical curriculum. 

Well, because they commonly struggle with that expectation, we often don’t provide non-speaking students with an academic curriculum in school — we “manage them” and teach them how to fold a towel just right. We often do not invest time, money and human resources in teaching them how to use communication tools, either. This seems to be especially true when the students cannot control their motor movements.

To support the strengths of people with high physical support needs and who are non-speaking would take a commitment—a commitment to providing staff well versed in the teaching approaches that are helpful, and to providing appropriate assessments, curriculums, and experiences. 

One main argument against the neurodiversity movement is that too much attention paid to autism acceptance (rather than causes, treatments, and cures) might lead to the diversion of public funds away from ways to support those with the most disabling autistic symptoms (now and in the future). How would you respond to this?

I am not sure why we have to choose one or the other, as I don’t see the two sides of this question as an either/or proposition. We must achieve acceptance, and concurrently, we must funnel money into community programs, supports, approaches, as well as into developing school curriculums and life skill curriculums that are aligned with our way of learning. We should do this to help autistics who are here right now and are trying to cope and then thrive.

I do not think we should be focusing on cures. This tells autistics that the way we are is defective. Research to improve the more disabling physical challenges experienced by some autistics is important—but keep in mind that both the lack of motor control and inability to communicate with spoken language because of apraxia are not autism. Well– not part of the diagnostic criteria anyway.

Most of us do not want research that is focused on making us…not autistic. As long as neurotypical is the gold standard, we will not be accepted, and this is the crux of that issue that is having catastrophic consequences. Let me explain.

The cost of not understanding and accepting autism has led to high mortality rates: death by suicide for verbal autistics ranges from eight to 13 times higher than the general populations, with average life expectancy approximately 16 years younger. Those with an intellectual delay can expect to die 30 years earlier than the rest of the populations. An understanding of our neurotype is essential to improve outcomes for autistic people of all abilities, and most importantly, to save lives. Consider that one study concluded autistic children attempt or contemplate suicide 28 times more frequently than typical children.

If we can shift understanding of autism, we may be able to change actions.  Right now, autistics are largely not accepted (tolerated, perhaps), not understood (rather, we are feared  or dismissed), and until society stops ‘othering’ us and embraces our experiences as valid and worthy of resources, we are unlikely to see the kinds of supports we require. We should be spending money on public education campaigns showing autistics of all abilities who are invested and engaged in their communities. This effort should illustrate the intelligence, strength, and resilience of autistic people. In addition to public education, let’s work to provide the kinds of supports and services autistics need here and now to thrive.   

What mistakes do you see neurotypical autism advocates make?

In order for advocacy to result in useful and relevant change, autistic voices across the spectrum of abilities must take a lead role. If those who understand the world through a typical lens are deciding what we need, they are often going to be wrong. They have been wrong. NT advocates make choices for us without consulting us—and without deferring to our preferences and choices. A great example of this is the language divide: the majority of autistic self-advocates prefer to use language that identifies us as autistic. This word, however, makes many parents and professionals quite upset—angry, even. They don’t like it. Honestly, though, they don’t have a say. Respectfully, this is our identification, not theirs. I actually appreciate many NT advocates—especially those who try to understand the autistic culture. When they understand the meaning of ‘nothing about us without us,’ and then help us move toward what we are seeking, I am very grateful.

Name some fundamental “musts” to raising a child with a positive autistic identity.

As it stands, we are doing almost everything wrong as a society. Here are my quick tips for parents to help raise autism-proud children:

  • The biggest gift you can give your autistic child is to try and understand autism from our perspective. If you can consider situations through the autism lens, it will often help to inform a more effective and positive response.
  • In everything you do, ask yourself: How will this affect my child’s dignity? Here’s why. Autism can mean the autistic child acquires skills and mastery in life skills, communication, social understanding, sensory and motor processing, executive functioning, and emotional regulation along a different timeline than a typically-developing child. As a result, people may get impatient when expectations are not aligned with the autistic child’s ability. The children may then be reprimanded, chastised, or corrected on a regular basis by many different people, and in many different settings, all day long and across years. Even when done with love and kindness, it chips away at the child’s confidence, and many autistic children become risk averse because they simply do not trust their ability or instinct. If you can identify the gap in their skill or understanding and then teach to that, it is far more positive than catching the child being autistic and making them feel as though they have done something naughty, rude, or inconsiderate…or that they are too slow and are causing everyone an inconvenience.
  • Use positive language, because being corrected or being told, ‘No’ are often triggers. Flip your language to tell your child what they can do, not what they can’t.  
  • The more rigid and demand avoidant the child, the more flexible the adults need to be. Often, those children who cannot cooperate with demands are driven by anxiety—they need to be in control of what is being asked of them. If and when this is the case, children do well with a collaborative approach: do you want to tidy your room now, or after lunch? Do you want pizza for lunch or macaroni and cheese?   
  • Don’t allow anyone to shame your child for a social misstep. This is a social communication diagnosis, and our children often need to be taught, directly, what others may pick up intuitively. It can be so helpful to identify the gap in the child’s understanding, and then, being very mindful of the child’s dignity, find a way to teach what the child has yet to understand. 
  • The majority of autistic kids have slower processing speed. Some rules  of thumb might be that they can do half the work in twice the time, that they are six second kids in a three second world. Understanding what slow processing means in your home can mean a sea change. If your child needs five or six seconds to respond when you ask them to do something, try asking, then waiting. Make certain that you have their attention—don’t call them across the room–then give one clear and unambiguous instruction: ‘Chris, put your shoes on, please.’     Here’s the hard part.  Now say nothing and wait. Do not interrupt their processing, because if you do, you shoot yourself in the foot. You cause a reboot, and the processing will start all over again. Though there is much to consider even in this little scenario (does the child actually know how to put on the shoes? Are they so anxious that they can’t remember what they have learned, or cannot comply with your command?), learning how to wait to respect the child’s processing can make a world of difference. It can really reduce anxiety in the home and improve the family dynamic.
  • Visuals are a best practice and are essential for many autistic children.  Most of our kids benefit from having all verbal commands paired with a visual. In simple terms, this means if you send your 10-year-old upstairs to get your purse and keys, as you are saying it, hand her a note that says: “Keys…Purse.” Have a weekly or monthly calendar and teach your child to use it. Create a to-do list for the morning, for homework, and for the evening routine. Many parents think that if their child is bright and communicates verbally, they don’t require visual support. For the vast majority of autistic learners, the visual reference helps compensate for the impact anxiety has on memory, or for difficulties in executive skills that can mean, among other things, they struggle to remember what comes next.
  • Live your life out loud. Autistic children may think they are the only ones who mess up—the only ones for whom things don’t go right, or who struggle to understand what to do. The truth is, plans change unexpectedly for everyone at times, but our children are not aware of this. If you were going to make lasagne, but find you are out of cheese, as the parent, you’d just figure it out and decide on making spaghetti or something else. If you have an autistic child, let your internal dialogue be heard so you can demonstrate problem-solving to your child: “Oh dear. No more cheese left! That’s okay. I will make something else that everyone likes. Let’s see—do I have spaghetti sauce? I do! Perfect. I will make spaghetti instead of lasagne tonight.”  By doing this, you demonstrate emotional regulation as you cope with an unexpected change and you solve a problem.
  • Autistic children have intolerance for uncertainty.  The more we can help them to understand what to expect, and what is expected of them, the less anxious they may be. Try incorporating the idea of a Plan B into your life. It will help your child to be more flexible when things change unexpectedly. For example, if you have planned to take your child to the park on Saturday morning, teach them to put that plan on their calendar—but not before also including the backup plan! ‘Chris, I am looking forward to taking you to the park on Saturday after breakfast. I love spending time with you! Now, what is our Plan B in case we can’t go…like if it rains or one of us isn’t feeling well?” The child then chooses Plan B: to watch a Disney video with you and have a bowl of popcorn if the park trip doesn’t work out. You make sure to get the child to put the Plan B on the calendar—and you will review Saturday’s plan several times during the week.
  • Sensory differences are real. Validating the child’s experience and then letting them know you want to help them to feel comfortable can go a long way to reducing anxiety.  
  • Keep in mind that the majority of autistic people have some sort of sleep issues. Some studies suggest our diurnal rhythms—our body clock—is off by two to three hours. This means your child just may not be ready to sleep when tucked in.
  • Find opportunities for your child to learn about autistic role models.  For example, the child who loves Pokémon may enjoy knowing that the creator of the popular card game, Satoshi Tajiri, is autistic. Autistic children benefit from knowing their unique way of learning does not have to limit their potential.
  • Learn about your child’s interests so that you can model and practice reciprocal conversation. I know way more than I ever intended about video games, but it allowed me to share a special bond with my autistic son. We’d get into great debates over which was the best gaming system, and he learned to share the conversation, listen to his communication partner, and manage his emotions in the process.
  • Remember that fairness does not mean equal—it means giving every child what they need. Your Autistic children may need more parent involvement and for a longer time than your typically-developing children.

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