‘Autistics can’t play together at all, can they?’

Stigmas

Molly has been diagnosed with Autism Spectrum Disorder (ASD) and I am regularly confronted with stigmas associated with it. By friends and acquaintances, by parents in the schoolyard, but also simply by passers-by in the playground or supermarket. I’ve learned that the less people actually know, the more they think they know.

Some unadulterated examples of what people have said to me in everyday life are;

“Hey, your daughter was potty trained at three. I thought autistic children couldn’t be potty trained.’

And: ‘Wow, how wonderful that your daughter plays so sweetly with my son because autists can’t play together at all, can they?’

And, “How many tantrums does Molly have per day?”

And; ‘All autistic people have an exceptional talent, what is Molly’s great talent?

And: ‘Are you sure your child is autistic? I’ve just had a look and she’s not acting retarded at all.’

I also find myself telling people that Molly has ASD and then suddenly they start talking to her like her head is filled with popcorn and Styrofoam. Very special.

More understanding

Well, I don’t want people to tell me that my daughter doesn’t seem to have autism because they think that makes me feel comforted. Molly does have autism and I don’t care, it’s just part of her and the fun, funny, sweet girl she is. Autism cannot be “cured” or brushed away. Nor should we want that. We just want there to be more understanding from now on for everyone who is different in any way and deviates from ‘the norm’. We must strive for more inclusiveness, tolerance and less prejudice within our society. I’d rather someone say to me; Hey how special, I didn’t know this could also be autism! Learned something again today.

I don’t expect to be able to move mountains. My wish is that people know that the autistic spectrum is extremely broad and complex. No person is the same. People with autism are people too, so they are all different. It is essential to loosen some of the stigmas that are inextricably attached to ASD.

Disturbed, emotionless and aggressive

It is still too often thought that people with autism are all contact-disturbed, emotionless, aggressive, inflexible and weakly gifted. It is also sometimes thought that an autistic person is a superior professor who prefers to obsessively look through a microscope day and night in the autistic laboratory. However, those views are not accurate.

For example, you may have been diagnosed with ASD and still have a normal or above average IQ. So you can be, like my daughter, very gentle and caring and autistic. Also, Molly (while becoming verbal only late) has a good sense of language that allows her to talk very animatedly. Yet she has ASD. Molly is a bit strange, she is and thinks slightly different than average and processing incoming stimuli takes a bit longer, you will notice that when you communicate with her, but that does not have to be an obstacle or handicap. Certainly not if there is understanding.

Incentives

Because of the complexity, there have never been really good nuances within the spectrum. But since classic autism, PDD-NOS and Asperger’s syndrome have all been grouped together – and the most obvious forms of distinction have therefore disappeared, the concept of autism has not become much clearer. This is annoying because it can lead to misconceptions and (misplaced) expectations in various ways. The only thing you really know when you hear that someone has ASD is that his or her brain works differently than a normal brain. Certain incoming external stimuli are transported and processed in a different way. In my opinion, the diagnosis of ASD in itself says nothing more than that.

It depends on each person whether and where ASD will cause discomfort and/or challenges. The character of the child plays a role, the way in which the environment deals with the diagnosis also plays a major role. There are numerous factors involved. Where is someone on the spectrum? Deep or shallow? This often only becomes clear at a slightly later age.

Where are the (stimulus) sensitivities? On one sense? On all? Does the child have a syndrome or intellectual disability and does it have autistic features or does it actually have ASD? What is the IQ and what are the possibilities? Is the child flexible or not at all? Is the child self-absorbed? Is it unhappy? Or does the child not suffer much from it and is it comfortable in his own skin?

Future full of happy moments

There are many factors involved that are not directly related to the autistic spectrum. It’s important to keep this in mind before jumping to conclusions about someone with ASD. Autism remains a delicate subject. That has become more than clear to me in recent years. Nothing can be written about it that doesn’t – at least – kick one individual in the sore leg. And I’m sorry in advance. Because I do understand that. Precisely because every individual has his own story.

Parents/carers can also experience things differently than the person in question. I know that there are people with ASD who think that people who have not been diagnosed beforehand should keep their mouths shut. I tend to disagree. Everyone is entitled to their own experience and story. In the end I write all this with all the best intentions; a future with a greater eye for tolerance, more inclusiveness and more opportunities within our society. Because I want – just like other parents – that my daughter can and may be herself and that a future full of happy moments awaits her.

I close – not without reason – with a quote from Steve Jobs: ‘The people who are crazy enough to think they can change the world, are the ones who do.’