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Autism Interview #112 Part 1: Maxine Share on Diagnosis and Education

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. In Part One of her two-part interview, she shared her diagnosis story, discussed her work as an autism consultant, and offered recommendations for supporting autistic children in the classroom.

When/how did you first become aware of your autism diagnosis?

The short answer to that is very late in life and because my autistic son called me out. The long answer? Here you go.

 In my full-time, paid work, I am an autism consultant. In that role, I do a lot of teaching, but a big part of the job is working directly with the families of autistic children to help them understand the autism identification, and solutions to challenges in school, the home, and community. In those meetings, I’d very often notice autistic traits in the mothers who came to meet with me. What were the things I noticed specifically?

I’d notice that they were amazing advocates for their children, but had great difficulty standing up to bullies or challenges that targeted themselves. I heard that they didn’t have or feel they needed close female friends—this seemed especially true when they were close to their partners.

If they did want female friends, they’d say it had always been hard to make new friends, and that they felt like they were always on the outside looking in when it came to understanding the social world.

I saw that these mothers were tired because they didn’t sleep very well—they could not stop thinking about all of the unfair things that were happening to their child, and worried into the wee hours of the morning about what might become of their son or daughter. Other times, they couldn’t sleep because of a social slight or social injury they had experienced at work or from another adult in their life. Commonly, these social injuries had happened a long time ago, but the women had not been able to resolve the conflict or let go of the offence.

I saw sensory issues (fidgeting, fidget items, doodling throughout the consult, aversion to certain sounds like ugh!! chewing!!—and lots and lots of women with a history of eating issues and eating disorders. Oh—and after the consult, these are the women who took the time to write back. These long, long, long emails were filled with minute details that the writers felt were very important in relation to the issue we were working on together.

I am not a diagnostician, but when those women expressed difficulties in their lives, a wish to know why things were always so hard for them, and a desire to improve their experience, it opened the door for me to have a casual discussion about the possibility that maybe, possibly, could it be that they had autistic traits, and if so, could investigating that further give them some clarity and direction?

Many of these women did go forward to pay for a private assessment and each one ultimately got an answer: they are autistic. 

I was remarking to my young adult son about how remarkable I thought it was that I, essentially a lay person, could so accurately identify autism in adult women when highly-paid and educated professionals miss it all the time.

“I don’t know how I know autism is the answer these women are seeking, Daniel—but I just do.”

My understated autistic son said, with more than a hint of sarcasm:  ‘Seriously? You don’t know?”

I just looked at him. I had absolutely no clue what he was suggesting…and after rifling through the possibilities in my brain and coming up blank, I said, “What the heck are you talking about?” 

“Mom,” he said. “You are so autistic.”

I opened my mouth to rebut, though nothing came out. Often, I cannot speak if I am overwhelmed with surprise or any kind of emotion. When my husband, Marty, asked me to marry him, I just blinked at him for about 10 minutes. Not a word came out.

When I could respond to Daniel after absorbing his statement, I let him know how ridiculous it was. He shrugged and said, “Ahhhh. I get it. You’re embarrassed You don’t want to be autistic.”

Daniel. That’s not..”

“No, never mind. You’ve always told me that being autistic is just a way of being human—a unique way of learning and experiencing the world…but you are embarrassed and you want no part of it. Mom—you do all of those things. You write long emails, worry all the time, are timid when it comes to defending yourself, but a social justice warrior, and go to the mat to get me what I need. Sensory issues? Mom—you are like The Princess and the Pea….but that’s fine. You’re not autistic, and I should be proud to be.”

The little bugger.

I went for a formal diagnosis at one of the best know centres for supporting Asperger’s/ ASD Level 1 in Toronto, convinced they would find anxiety and sensory issues, but not autism.

I was wrong. I was diagnosed autistic six years ago.

Some of your time is spent now as an autism consultant for families with children on the spectrum. What was your educational experience like? Does your personal experience help inform your practice?

In the past, I helped parents of children diagnosed with Asperger’s/ ASD Level 1 in a very direct way to advocate for the needs of their children. These days, I work for a government-funded non-profit agency, and this paid work allows me to share what I know with families to help empower them to navigate a very confusing system of supports, including the education system. Sadly, school can be a very stressful place for many autistic children. The speed and volume of the curriculum, along with the sensory and social demands, exceed their ability to cope. Many autistic children are extremely anxious in the school setting—or contemplating school after a weekend or a holiday. 

It is really important for parents to learn how to speak up and speak out for their autistic learners. Our school systems seem to be reactive rather than proactive when it comes to meeting the needs of verbal autistic students. The attitude seems to be this: if the student can speak and has average intelligence or higher, they couldn’t care less about any challenges the child may have. Conversely, if a student does not communicate with spoken words or has higher support needs, it seems as if the system could not care less about their strengths. 

Autistic children who do not present with challenging behaviours are unlikely to be prioritized for any kind of special education considerations. I say, only half in jest, that unless your autistic child breaks a window or falls two years behind academically, they are not going to get any attention. The real challenge in the school system is that in many jurisdictions around the world, there are so few educators who really understand the autistic learner. General education teachers are not adequately educated or prepared to address the challenges or capitalize on the strengths of children who have unique ways of learning, interacting, and experiencing the physical/ sensory world. We have to give teachers the education and training to fully understand the autism culture. This will allow our autistic children the environment they need in order to have more positive experiences in school—and is most fair to the many wonderful educators working in a system of support that doesn’t seem to have their backs.

My experience of the education system with my autistic son was mixed: I removed him from public school after Grade 1 when it was clear the public school had no idea how to support him. They initially thought he might have an intellectual delay, completely missed his dyspraxia (a motor disorder that makes a child really clumsy) and were absolutely unaware of sensory processing differences at the time. In a nutshell, I thought he was brilliant; they didn’t. Chaos ensued. My advocacy took me to the ministry of education, and perhaps as a result of that, the school gave him the comprehensive assessment I’d been asking for. It showed he was in the 99.9th percentile. From Grades 2 through 7 he attended Montessori—it was wonderful—and then he returned to the public system. By then, I was a knowledgeable parent advocate with deep knowledge of the new Asperger’s diagnosis being given to bright, verbal autistic children of average intelligence or higher. This allowed me to develop a really collaborative approach with educators: I would identify any problems, tie them directly to the documented needs, and then suggest a solution. This approach helped me to help my son through middle and high school. I would never go to the school with a demand or complaint. It was always a challenge that we would solve together, but I always felt as though I had a distinct advantage given my knowledge of the Asperger’s (now ASD Level 1) diagnosis. In my province in Ontario, Canada, school boards must meet the documented needs of its learners. I made it my mission to get him all the documentation he needed, and to learn what supports were needed to address those needs.

Overall, my experience of the school system has been largely positive.  We’ve met incredible teachers always willing to go the extra mile, and administrators who gave them the freedom to do so. I know, from my work, that my experience is less common. It makes me hopeful, though, that educating parents can make a huge difference for autistic kids. In that way, my experience has really informed my approach. 

I strongly believe in empowering parents through education. When parents learn about autism in a 360-degree way, it allows them to respond to administrators and other professionals with confidence and authority as they advocate for essential supports. 

In a recent article, you recommended that all autistic children get a comprehensive psychoeducational assessment and sensory assessment to help communicate to educators how they learn and how they can be supported in the classroom. In your experience, what percentage of autistic children have these assessments done? What do you think are the main obstacles that prevent everyone from having them?

Here’s the thing. Autism IS NOT a mental illness or a mental defect. It IS a unique way of learning and of experiencing the sensory world, however. It has always astonished me how educators guess at what our autistic children need in the absence of any professional documentation regarding the learning profiles or sensory profiles of autistic students. A psycho-educational assessment has the potential to tell us exactly how our child learns, and pinpoint exactly where they are struggling. It can help support the essential need to supplement all verbal learning with visual supports, for example, or measure the degree of strength or struggle in the many areas of executive functioning that are so important in the school setting:  working memory, organization, and task initiation, to name a few. Once we know what the challenges really are, appropriate and relevant supports can and must be provided. Sadly, very few autistic children are provided with these assessments.

The same is true of sensory processing assessments. They are rarely provided within our school systems, and no one is telling parents of newly-diagnosed children just how important this assessment could be to understanding their child’s experience of their world.

It is worth noting that the sensory differences of autistic children are not a sidebar to the diagnosis–up to 90% of autistic children have sensory and/or motor differences that can be the cause of, or contribute to, their behaviours or emotional responses. It stands to reason, then, that if we don’t have a professional understanding of how a child is experiencing his or her physical//sensory environment, we will fail to make connections between coping behaviours, school achievement, and the child’s experience of the school setting. The many autistic children who are overwhelmed by the noisy, unpredictable sensory environment that is their school day may exist in a  state of fight, flight, or freeze while there, with educators completely missing the cause. Our children are instead characterized with unflattering editorial words: lazy, spaced out, rude, defiant, when all they were trying to do was protect themselves from a world that is Just. Too. Much.

We must have comprehensive sensory assessments, along with psychoeducational assessments, when we are trying to figure out why an autistic child is struggling. If we don’t provide these assessments–along with professionals who truly understand the implications of the findings–I would suggest that any ideas we have to support challenges are just a crapshoot—guesses based on a neurotypical worldview. In my experience, so-called behaviour issues are really ‘lack of understanding’ issues and ‘lack of appropriate support’ issues. It’s high time we started providing these to every autistic child.

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