For about 20 years, I’ve been involved in assessing and diagnosing hundreds of children and adults with autism and Asperger’s syndrome, which are both ‘disorders’ within the autistic spectrum.
To diagnose, the task is to understand a person’s developmental history and look for a collection of symptoms known as the Triad of Impairments in social interaction, communication and imagination, together with a narrow range of interests and a repetitive behavior pattern.
Medical-model loaded words such as ‘disorder’ and ‘impairment’ tell us that there must be something wrong with these people, but is that true?
In principle, I’m not in support of diagnostic labels, yet have diagnosed hundreds of people with this condition. Why?
Diagnostic work is black and white. If I think a diagnostic assessment for a disorder on the autism spectrum is going to benefit the person concerned, my job is to then find the evidence and diagnose.
A disability but not a mental health issue
Autism is defined, essentially, by a lack of development in imagination. This is demonstrated by limited play skills in children; a literal, rigid and scientific (but less creative) thinking style; and a lack of flexibility and adaptability.
Developmentally, a child lacking in imagination will struggle with social interaction and communication because imagination is a necessary component of thought that enables us to:
- Put ourselves in another’s shoes
- See things from a another person’s point of view
- Intuitively sense or think about what others might be feeling and thinking
- Pick up on the many subtleties of social communication
- Feel empathy
Those with autism aren’t disabled across the board. Like all of us, they have strengths and weaknesses, and skills and talents.
I see autism as a disability, but not a mental health issue. It’s a specific social and communication disability, because of the difficulties with the development of imaginative thinking. However, those with autism aren’t disabled across the board. Like all of us, they have strengths and weaknesses, and skills and talents. Perhaps, in one way or another, we could all be classified as having a disability, depending on what symptoms we were looking for.
As some people are more or less intelligent than others, some are more or less imaginative than others. We label those with very low intelligence with a ‘learning disability’ (or, in some countries, more derogatory terms are applied), and we label those with a limited capacity to think imaginatively as autistic.
Some children are labelled with both a learning disability (or specific learning difficulty) and autism. Others may be highly intelligent but struggle with imaginative thinking, and then the label tends to be high-functioning autism or Asperger’s syndrome.
Some people with an autistic spectrum disorder refer to the rest of us as ‘neurotypical’.
So, what is the point of a diagnosis? Many of the children and young people I come across with these undiagnosed difficulties are suffering and struggling with how others experience them as different, as well as with not fitting in. Typically, I find they’re suffering from the negative effects of the ‘neurotypical’ lack of understanding, and their frustrations with these effects.
Normally functioning adults (if such people exist) and some children at home, at school and elsewhere expect and pressure many children with autism to adapt and conform socially and behaviourally, but most can’t. Consequently, many experience ridicule, rejection, punishment, behaviour modification and specialist teaching. Some parents search and hope for a ‘cure’, or look for help with changing their child’s behavior; for instance, by seeking ways in which social skills can be taught.
As well as seeing many unhelpful ways that people relate to autism, I have to say that I’ve also come across countless specialists, teachers and parents who get it and do fantastic work with these children. The biggest problems can occur within mainstream education, which a child with an autistic spectrum disorder may find confusing and overwhelming, and within families that are struggling to make sense of why a child is unable to cope with everyday life and behave as they do. The child with undiagnosed autism is at the highest risk of not being understood, and consequently, is likely to suffer the most.
The problem for the person with either undiagnosed or diagnosed autism is always, always, always their particular environmental circumstances and the expectations and pressures placed on them by often well-meaning educators; perplexed, frustrated and stressed parents; and the child’s peers.
Change, adapt, fit in, conform, do what the others are doing, don’t do that, sit in your chair, don’t be rude, that’s not appropriate, be quiet, pay attention and listen are common instructions given. Alongside this, they can suffer various cruelties delivered by other children, and these tend to only worsen as the child ages.
Those with autism make mistake after mistake, and don’t learn from the mistakes that they often don’t realize are, according to others, mistakes. The consequential stress and strain from the demands and expectations placed on them by others can become unbearable, and then low self-esteem, a lack of confidence, anxiety, a low mood, withdrawal, behaviour problems and other mental health issues develop.
Then I come along, and diagnose autism. “Now, what do we do?” they say.
“Accept him (or her) as he is, I say.”
Love and accept them as they are
Accept who your autistic child is and adapt to how he is. Don’t expect him to change, but change how you interact and communicate with him so he can understand and communicate with you. Change and adapt his school environment so he can function in it. Encourage him to do what he’s good at, what’s he’s interested in and what he loves to do. Join him in his world and love him for who he is.
Don’t try to take the autism out of the child. Instead, recognize the autism as part of who she is, and see that without the autism, she wouldn’t be the same person. Grieve for the child you never had, the one you were expecting. Then let that child who never existed go, and be free to love the child that’s with you, the one who’s here.
Let go of your dreams and hopes for your child, and embrace theirs. Follow their interests and passions, whatever they are, and find joy in the things they find joyful.
The child with autism was born to be happy just as he or she is. The problem is that others have a problem with them, and it’s this that causes their unhappiness.
We’re far more capable of adapting to autism than the person with autism is of adapting to us and our ways.
Difference is bad and conformity is good, so we’re conditioned to think. Your problem with autism is what causes those with autism to be unhappy. They struggle to adapt and don’t see the point of being different from who or how they are, nor do they know how to do that. But we’re far more capable of adapting to autism than the person with autism is of adapting to us and our ways. We can adapt, so let’s adapt!
Each person with autism arrives in this world with a willingness to accept themselves as they are, until others tell them they’re different and there’s something wrong with them, Then they experience non-acceptance, the pressure to adapt and rejection, which can lead to despair and self-loathing.
We condition all children to adapt, and we define who they are and how they should be, but those with autism are different because they tend to remain true to themselves and who they are, regardless. We act as though they refuse to change, that they stubbornly or willfully won’t change, but most likely, this is because they can’t—not won’t—change.
Those with autism tend to readily accept us just as we are, as they don’t tend to think about how we should be different. So why can’t we adopt that approach towards them? They’re more their natural selves than we are, as we’ve had that taken away from us by how we were parented and taught. Our own childhood conditioning can cause us to end up losing our way and losing track of who we are or how we’re supposed to be. Then we become adults who want and expect those with autism to be more like us. Why?
It could be that autism is here to teach us acceptance of those who refuse to change or adapt because they can’t. Maybe autism can teach us that really, we have no choice but to learn to accept those on the autism spectrum as they are. Perhaps autism is pointing the way for acceptance of the natural self. So let’s not try to change those on the spectrum, but instead, let’s change our attitudes and our behaviours towards children with autism, for their benefit and well-being.
Autistic people are their natural selves
We develop layer upon layer of a socially constructed, complex individualized identity. When we’re in trouble with who we are and how we function, we seek out therapists to help us peel away those socially constructed layers of who we thought we were.
Our friends with autism don’t do that. They don’t need therapy. We can see that they’re closer to their true nature than we’ll ever be. They tend to be straightforward, honest and loyal, and not socially manipulative. We can trust them to be themselves and react in ways that are natural.
Emotions and thoughts are often unfiltered, so we know where we are with them. We can trust that they are who they are. But they don’t know where they are with us, and they can’t trust our contradictory, unreliable, illogical thoughts and behaviours. We’re so inconsistent and unpredictable. Their naïve, straightforward social non-complexity is no match for our dishonest, know-best manipulation and our insistence that they have to think and behave more like ‘normal’ people.
For a change, let’s let those with autism be, and let’s work on adapting ourselves so that they can be unhindered and free to be who they are. Let’s learn to change their home, school and social environments in ways that work for them.
One day, diagnostic labels will no longer be necessary. We’ll see difference, accept it and adapt to it. I look forward to the day when I’m no longer needed, when it won’t be necessary for me to do what I do: diagnose children with an autistic spectrum disorder.
But until then, when you see difference and can’t accept it—when you think that person should change—call me (although I should add that many parents seek help because their child is facing severe challenges and struggles at school).
Call me, and I’ll come along to diagnose this difference and label it autism.
Then I’ll say, “Teacher, parent, brother, sister, friend and tormentor, will you now be willing and committed to adapting your attitudes and behaviours for this person with autism, because you can? Can you adapt to him or her without expecting them to adapt to you, because they can’t?
“And most of all, with this diagnosis, can you now please understand and accept this person with autism just as he or she is?”
Children with autism don’t need to be taught to be as we are. In fact, there’s nothing they need to do, for change isn’t required. The one who needs to change is you. All you need to do for any autistic person you know is ask nothing of them, and then find a way to understand, accept and adapt to their needs. That’s what autism can teach us, and that’s all autism asks of us.