Autism Awareness - Danger: Hidden Differences

As part of the World Autism Awareness Day celebrations and at the start of Autism Awareness Month, we’ve teamed up with Joanna Grace, a sensory engagement and inclusion specialist and founder of The Sensory Projects. Joanna has written the following blog about the challenges children with hidden differences face and the steps educators can take to help them meet these challenges.

Children with hidden differences, for example autism, ADHD, sensory processing disorder and so on, struggle with two things:

1) The barriers presented to them by their condition

2) The misunderstanding of their condition.

You might think that 1) would be the more serious, but actually taken over a lifetime 2) can be the more devastating. Indeed in some instances it can even be life threatening.

Research into neurodivergent conditions shows that the secondary disabilities acquired through the misunderstanding of the primary disability lead, among other things, to a greater risk of: substance abuse; unemployment; mental ill health; abuse; and of death by suicide. These topics seem far from most classrooms, but the narratives created around children when they are young are extraordinarily powerful and set them out on a direction in life. The difference between a few degrees difference in direction now might only be a matter of a few meters, but continue following those paths, continue telling those stories, and years down the line you end up miles apart.

What educators and those that support children with neurodivergent conditions must do is recognise that their conditions are a physiological reality, and not purely a matter of different patterns of behaviour that need adjusting until the child fits in with the expected template of what a child should be.

For example autism has been linked to a person’s genetics. Steve Silberman, in his history of the condition: Neurotribes (pg 470), summarises: “researchers have determined that most cases of autism are not rooted in rare de novo mutations but in very old genes”.

I may be able to change how I act but I cannot change my genetics. And since the early 2000s researchers have been able to identify physiological differences in the brains of children with sensory processing difficulties, particularly differences in the functioning of their sympathetic nervous system. Those children may be able to be taught to supress their responses to sensory stimuli, but that does not change the make up of their brain. Yes neuroplasticity exists. But not to the extent that someone can practice being “normal” long enough to eradicate a particular neurodivergent condition. And indeed, when we think of the many assets brought to society by neurodivergent brains, the desire to eradicate suddenly shows itself to be very troubling. In truth what people are seeking to eradicate is suffering, and that is dealt with far quicker with understanding and insight than it is by cure treatments.

This is a big topic, and one that deserves a lot of reflection. So for now I am going to give you two little illustrations for you to use as springboards for further thought. One is personal to me, and one is a situation I’ve been hearing repeated across the UK as the children return to school post lockdown.

My brain doesn’t flex.

I would be regarded as having been successful in education, by which I mean I got good grades and went on to study at degree level, masters level and currently PhD level. I have had a successful career in education, first as a teacher and now as a consultant. The Sensory Projects, the organisation I run, has a global reputation for inclusive practice. Why am I telling you all of this? Well because the next thing I am going to say is “I am autistic” and I am worried that as soon as I say that you will draw me in your mind as someone who is incapable. This isn’t a personal judgement on you, this is a judgement based on experiences gone before.

I find change enormously difficult. I’ve worked within special education, I have prepared autistic students for changes in their own lives. I am currently moving house. I am using all the strategies I have in my toolkit on myself. I understand why the change is happening, I understand why it is positive, I understand that it is a change I am choosing and wanting. And yet still my mind will not flex.

I feel it ought to.

I kick myself for it.

I try again.

I fail again.

I try harder.

I fail again.

I try to the point of exhaustion, and still I fail.

Time and time again I bash my head against the reality of my own condition.

I wrote above of being afraid of your prejudice. The most frightening place I encounter prejudice is within myself. That prejudice was formed by the stories I heard when I was younger.

Accepting that I am autistic involves understanding, accepting and embracing that my brain is never going to be able to flex in the way that a neurotypical brain does. (And actually in another circumstance this unwavering nature of my mind is an asset. A strength. It makes me loyal and committed. Someone who will stick to their principles and not be swayed. It’s just that in this particular circumstance it is not so handy).

Can you see the danger though?

It is not in the inflexibility of my mind. It is in my attitude towards myself. Through more than forty years I’ve kicked myself for having the brain that I have, and that kicking of self has been reinforced by the messages given to me by adults in authority around me.

What if, from the start, someone had taught me what my brain can do, what it can’t do. Showed me how to play to it’s strengths, helped me find the contexts in which my differences play out as strengths, not weaknesses. What if the narratives around me had been different? Perhaps the girl who was so ‘successful’ in education wouldn’t bear the scars of self-harm on her body that she does today?

I am someone who leads a relatively unchallenged life. Consider how much more dangerous these narratives could be to someone living a more challenged life.

She is clingy

Since children were allowed back to school post lockdown in the UK, I have heard from multiple families of autistic children saying that their son or daughter does not want to return to school. I am also aware of many neurotypical children who are very anxious about the return to school.

Here is what the schools see:

• Arya is autistic. She is nervous of the return to school and presents as very distressed in the playground. Arya’s mother is very anxious too. Staff coax and peel her off her mother and take her into the classroom. She follows the routines expected and completes her work.
• Niamh is neurotypical. She is nervous of the return to school and presents as very distressed in the playground. Niamh’s mother is very anxious too. Staff coax and peel her off her mother and take her into the classroom. She greets her friends and quickly gets back into the swing of things.

Here is what the schools don’t see:

• Arya walks out of school around the corner with her mother and emotionally collapses, she lashes out, she hurts herself, she shouts, she behaves in an irrational way.
• Niamh skips out of school and chats all the way home with her mother about how great it was to see her friends again.

Here is what a duff school does:

• Blames the girl’s anxieties on the parents attitude.
• Blames Arya’s outburst after school on her mother’s lack of discipline.

Here is what a great school does:

• Recognises that although Arya distress looks the same as Niamh’s that her diagnosis of autism is significant and factors this in to their approach to supporting her. Reassures both parents with open conversations and a demonstration of their understanding of their daughter’s unique needs
• Responds to Arya’s mother’s report of an outburst on the way home as a red flag indicating an urgent need for them to adapt what is happening in school. 

A challenge

I would like to leave you with a question, perhaps this would be a good challenge to set your team:

How much do you know about the strength profiles of the various neurodivergent conditions in comparison with the deficit profiles?

How equipped are you to teach children about their abilities? Can you help them write the stories about self that bolster them to meet future challenges? The narratives you create are powerful: do good with them.