Listening to autistic perspectives — up close and personal

How would you define autism that would help us understand it in the most empathetic manner?

Autism is a form of neurodivergence — which is to say, the brain behaves and develops differently than average. When we say ‘autism spectrum disorder’, we are talking not of a high-to-low sliding scale of abilities or development; but different abilities and sensitivities and skills.

Autism is very often experienced by the autistic person as a disability. In the same way that a left-handed person is going to struggle sometimes in a world set up for and by right-handed people, and a dwarf (a very short human, not a fantasy race!) will struggle in a world made for average-height humans. This is not to say you should assume ‘incompetence’ on their part.

(Other forms of neurodivergence include learning differences such as dyslexia, anxiety disorders, OCD, ADHD, developmental differences such as Down syndrome, Tourette syndrome and so on… even migraines are an expression of neurodivergence because the typically developed/developing brain does not experience migraines.)

What’s the biggest misconception about autism?

There are two very common stereotypes.

• One: that all autism involves considerable social impairment and/or intellectual disability.

• Two: the ‘autistic savant’ syndrome, fictional and historical, all the way from Einstein to Rainman (starring Dustin Hoffman) and The Good Doctor (a Netflix series).

However, while autistic people often experience disability because they are forced to function in a world set up for neurotypical folks, refusing to accommodate them, and while some autistic persons are ‘twice exceptional’ — with heightened sensory abilities or skill development in some areas while struggling with sensory tolerance/social skills/other skills in other areas — this is not the norm. They are different, and in that sense ‘exceptional’ compared to the average, but they may not have as wide a variance.

The stereotype related to Misconception One is that non-speaking or ‘low/no eye contact’ individuals have intellectual/ cognitive difficulties and ‘low IQ’.

Not so.

One may be perfectly capable of understanding speech and even conveying language through typing or assistive devices without expressing it verbally. Or, one may understand and have receptive language skills, while not displaying expressive language skills as typically used by most people.

The stereotype related to Misconception Two is the idea of ‘high-functioning’ and ‘low-functioning’ autistic persons. Fact is, a person may excel in some things while struggling in other ways (see ‘twice exceptional’ above!). What’s worse, for many autistic people, the access to skills and abilities (or their expression) varies in different contexts.

A person who can dance like a trained ballerina when alone may find it impossible to perform on a stage in front of people. A person who does not read or write might yet be pitch-perfect and word-perfect whenever it comes to music.

Often, the ‘functioning label’ means a person is underestimated and infantilised or treated as a (note: this is a slur word) ‘retard’ or is treated as ‘only a little autistic’. As a result, no accommodation is made and the person is just told to persevere and push through their disabilities, or their upsets, issues and need for support or accommodation is dismissed.

Here is a very popular — and very easy to understand — representation:

Can you describe some of the biggest challenges and rewards you’ve experienced as a parent of an autistic child?

The biggest challenge is ignorance (including of professionals, doctors and mental health experts) and quick judgements about naughtiness, stubbornness, etc., from those around us.

As a parent, finding resources on how to accommodate and support an autistic child can be very hard to find, especially in India.

Language barriers are real, in regional languages. For instance, ‘divyang’ in Hindi does not cut it for invisible disabilities like autism.

Finding professionals who can respect the child and do not infantilise, condescend or coerce is extremely hard. Finding educational spaces that are truly inclusive is hard.

Rewards… I don’t know quite what to say. There’s neither punishment nor reward in parenting an autistic child or a disabled child (or, indeed, any child). That makes for a rather icky perspective.

It is a common trope to use euphemisms like ‘special child’ and sort of make a ‘saint’ out of both the neurodiverse person and their parents/ caregivers/ friends/ family members… This too is heavily ableist and objectifying. It’s neither appreciation nor support!

I am grateful to have grown up with autistic people and have the opportunity to parent one — seeing a different perspective on the world, understanding how very wonderfully different people can be, outside of our expectations. It forces one to grow beyond one’s assumptions — a lot! It challenges the ability to empathise with a person whose brain may be ‘unknowable’ for typical brains… Because empathy is not just for ‘people like us’, surely? That's only the easiest part of empathy...

Many autistic people have challenged my perceptions around, say, power dynamics, too.

I also grew up in a time where autistic cousins were called ‘retarded’ even by medical professionals — who could not see the ways in which they were struggling with a disability that was not a ‘retardation’ or development disorder at all. It is wonderful to live in a time where we are moving beyond that — and understanding that valuing ‘intelligence’ (something I was trained to do as a child) is a form of ableism too. Quite the eye-opener.

What advice would you give to those who have recently had an autism diagnosis in their family?

Advice 1: Do not try to ‘fix’ this person in your life. Do not chase after snake oil salespersons and miracle medicines. There is no disease here to cure.

Get over your own ableism and understand the value of a human being is not in their ability to do things for you or free of you (i.e. without your help). Being ‘independent’ is not some sort of absolute moral good and being dependent or needing accommodation/ support with a disability is not a failing.

Advice 2: Read and watch actual autistic people, not just experts. The first authority on autism is an autistic person. Experts on autism come second.

Advice 3: For those who’ve been handed a diagnosis or are wondering about a young child — please do not wait to get help or hide the diagnosis and the child. There is no shame here!

There are so many ways we can communicate as humans — eye contact and spoken language are just two of them. Learn your child’s language, surround the child with supportive people willing and able to engage and communicate and socialise.

And do not wait for them to ‘go to school and outgrow their awkwardness’. Often, this does not happen. Often it only worsens the anxiety, stress and frustration for the child. It is our job to meet our child more than halfway — no matter who they are.

Remember there is very high incidence of mental health issues in the neurodivergent population. That is because we, the neurotypical world and its denizens, are prone to stressing them out and exhausting them. Guard against ‘overwhelm’.

Advice 4: It is hard, I understand, from a lifetime of planning for the future, unconsciously imagining a ‘family life’ and ‘retirement’ and so on… but try and let go of set ideas: ‘When will they ever get a job? When will they get married’.

This is a harsh truth whenever you have to plan around a disability, but more so when you have to work with neurodivergence where the child’s development is not going to follow any textbook trajectory — neither you nor their doctor can know what to expect in their development. It can go one of many which ways!

So, plan your finances and resources to allow for future support, for future accommodation, for all can help.

Advice 5: Learn about common co-morbidities and conditions (and don't assume they are caused by autism!).

Advice 6: And explore not only vocational skills for older children, explore joy, explore atypical friendships that look nothing like your own, explore connections throughout the community.

Finally, Advice 7: get them their vaccines. Autism is not caused by vaccines. There is no ‘vaccine injury’ messing up the brain. Autistic people are born autistic.

What support systems or resources have been most helpful for you and your child, and how did you find them?

This is the toughest one. I found books, I looked at the internet and read, together with other parents of neurodivergent children — during the process, so many learnt they themselves were neurodivergent, and felt relieved and empowered by it.

Search words like ‘neurodivergence’, ‘neurodiversity-affirming’, ‘autism acceptance’ are very helpful.

The Thinking Person’s Guide to Autism and the Facebook group ‘Ask Me, I’m Autistic’ are a couple of resources that come to mind.

Many autistic people are also highly visual — and many neurotypical folk (and not just impatient ones) understand infographics better and faster. So the Neurodivergent Narwhal pages are a great starting point!

Watch out for ‘light it up blue’ and puzzle pieces and organisations that are looking to ‘end the epidemic’ or funding research for ‘cures’ rather than accommodations and support. There is a real danger of ‘treatments’ and ‘therapies’ that are ‘gold standard’ and ‘so effective’ — but stressful (even PTSD-inducing). The hard part is shedding both blinkers and despair and looking for positive spaces, spaces where autistic voices are heard first.

Thankfully, in the digital era and a world where self-publishing is no longer an oddity or failure, there are books by autistic people, social groups of autistic people online, ready to share their experiences. Find them.