A spectrum of opinion
April 2nd was the officially recognised World Autism Day, which is actually just the start of World Autism Month 2019. In Ljubljana, Slovenia, the city castle was lit up blue as part of the international light it up blue campaign.
Autism is classified as a spectrum disorder, but what has also become apparent to me is that there is a spectrum of opinion as to whether or not we should accept and celebrate autism, or just try to cure it. On one end of the spectrum some say we should accept autism as a neurological difference, celebrate the difference and not try to change it. Whereas on the other side of the spectrum some say we should not accept and celebrate autism, and instead simply try to cure it.
But how about we meet halfway and try to do both?
A world of negativity
When my son was being evaluated, we lived through a horrendous world of negativity. Not our negativity, but that of many of the so-called experts evaluating him. We listened to a constant list of things he doesn’t do, cannot do, and won’t do; people who only saw what was on the surface and never looked deeper to ask why. Listening to them, you would think that he is terrible at everything. But this couldn’t be further from the truth.
It seemed that many of the people evaluating him were not in the slightest bit interested in what he does well. Any positive characteristics and skills we brought up were met with a dismissive nod, or a “yes but, he doesn’t do this”
When he was finally diagnosed with autism and dyspraxia, we thought maybe now that would change. But that was just wishful thinking. His school reports and teacher’s meetings are filled with a list of things he still doesn’t do. When we say that we have seen a lot of progression and improvement, the response is that it’s not fast enough. After a recent session with his new Educational Psychologist, when asked what I thought, I said that I saw a huge improvement and that two years ago he wouldn’t have been able to do a lot of the things she had requested of him. Again, no reaction. No, “that’s really good to hear.” “So he is progressing well.” Nothing.
And that I fear will be the bulk of my son’s life.
Who are really the ones that are not adaptable?
All of us have strengths and weaknesses. We all have deficits in something. Yet for us so-called neurotypicals, for the most part we don’t get continuously reminded of our deficits on a daily basis. We are not constantly told we need to improve, or do things a different way. Yet, for the most part, children and adults with neurological differences are expected to adapt to our way of doing things. We never try to meet them halfway.
One mother of an autistic child said the following:
“I have a real beef with the notion of celebrating autism when 22% of children with autism develop epilepsy and 70% experience gastrointestinal problems. In a recent study in the Lancet, two-thirds of adults with Asperger Syndrome, now part of the autism spectrum, reported considering suicide. 35% had made specific plans or an attempt. Another study showed children with autism were three times more likely than their typically developing siblings to be bullied. Children with developmental disabilities have a substantially increased risk of becoming victims of sexual abuse. Which of these grim statistics are we called to celebrate?”
But by celebrating autism, I don’t really feel that we are celebrating these aspects of it. We celebrate the achievements of neurotypical people, yet these people no doubt also have some health and personal problems. Should we not celebrate their achievements because of that?
How we treat them makes a huge difference
I can’t help feeling that many of the problems above are, in large part, exacerbated by the fact that their achievements are not celebrated enough; that their skills and talents are not praised enough and helped to be developed. In many cases these are largely ignored, or, and this is the worst part, put down to autism, as if it is a bad thing. “He has a superior intellect because he has autism.” But maybe, just maybe, he just has a superior intellect despite his autism. Many neurotypicals also have superior intellects. “She has an amazing talent for drawing because she has autism.” Did the famous renaissance painters also have autism? When you have a strong interest in something, and are allowed to pursue it, it’s amazing what you can do.
When a person loses an ability, it’s a well-known fact that other senses and abilities are enhanced, chiefly because these abilities are worked harder to compensate. A blind person, for example, will develop a heightened sense of hearing or smell.
A person with autism likely does the same.
Chris Packham credits his superior knowledge and understanding of the natural world to his aspergers and his hyperfocus. And while it’s likely this helped, I think that it’s chiefly because he has an interest and talent for it, and was allowed to pursue it. Chris was diagnosed as an adult, but I can’t help wondering that if he had been diagnosed as a child, his fascination with the natural world would have been accredited to his autism and therefore restricted. Much more focus would have been put on his social deficits in an effort to stop him appearing weird to others. Rather than be allowed to go off into the forest alone and study everything up close, he would have been made to spend more time learning social skills so he could fit in better. In that case, would he have gone on to become the brilliant naturalist he is today? Would constant focus on his social awkwardness and a need to correct this, have eroded his self-confidence and sent him spiralling into a world of depression and self doubt?
The fact is that we all have skills and talents, and we all have weaknesses and deficits. It’s just that children and adults with neurological difficulties have deficits that are more prevalent, and together they form an impairment which inhibits their ability to function in many other ways. So their skills and talents are often overshadowed by their struggles with aspects of daily life that we take for granted.
My son’s dyspraxia means that he has to work 50 times harder to carry out even the simplest task, such as holding a pencil. This, I can see, is mentally and physically exhausting for him. And he often needs a time out. Most people think that when he runs away or refuses to do something, he is being disobedient or just wants to do what he wants. But, while this may be true on occasions (after all, he is still a child) more often than not it’s a way of dealing with the frustration that has built up due to his dyspraxia inhibiting his ability to carry out tasks. When encouraged, he often comes back after a time out.
Think about the last time you had to do a task that no matter how hard you tried you just couldn’t do it. Remember how the frustration and tension built up the more you tried. And remember how you wanted to, or did, throw it down and walk away. This is how my son feels whenever he is faced with something he is unable yet to do.
We emphasized this time and time again to his teacher. When she gave him a test one day at first he struggled and couldn’t do it. So she gave him a break, and when they came back tried again. This time he aced the test.
An invisible disability
If a girl has only one leg, she is given crutches to help her walk. When she tries to struggle through a door, someone will hold it open for her. As she walks to her school desk and takes time to sit down, the teacher and children will wait for her. When she is seated and comfortable, the lesson will begin.
But that is not what is done for children with neurological disabilities. In playschool my son couldn’t carry out tasks as quickly as the others. He had trouble following long and complicated instructions that were given at full speed. He has poor balance and coordination, and this has a profound effect on his focus. When the meetings came, his teacher had a long written list of all the things he does wrong.
More often than not these children are seen as badly behaved, or disruptive. When in truth they are far from it. In most cases a child with a missing leg is given support with crutches, and help from others. Therefore the child doesn’t feel rushed, get frustrated, scared or have panic attacks, and because of that isn’t disruptive. But many children with neurological disabilities don’t get this patience and support. These children are often berated for their inabilities, and reminded day after day about what they are not good at and that they need to work harder and do better.
And this is not just the children, this treatment continues into adulthood. I watched a documentary on an autistic man’s attempt to get a job. He gave a speech to a group of businessmen. Now, one difficulty many autistic people have is maintaining eye contact when trying to do something that is very difficult. Speech doesn’t necessarily come instinctively to them, and they require all of their brain power to focus on what they want to say. After his very brave and concerted effort to stand up in front of this group of men and do something that was immensely difficult for him, their immediate response was to point out all the things he did wrong, such as looking into the middle of the room and not at any of them!
Now if someone treated you like that day after day, wouldn’t you spiral into a world of depression, frustration, self-doubt and ultimately contemplate suicide?
Acceptance doesn’t mean you are not going to help
The Paralympics aims to celebrate the skills and achievements of all people with disabilities. It highlights what can be achieved in the face of great adversity. So why shouldn’t we do that with autism and other neurological disorders?
When a person has a physical disability such as paralysis or a missing limb, we accept that person for who they are. We celebrate that person’s courage in living with their disability, and striving to overcome the deficit they have in life.
But do we not also strive to give that person the support they need for better mobility and improved functioning? In the case of a missing limb, you could say that this is a lifelong disability, and there is no cure. But are scientists not looking for ways to help with innovative ideas such as a bio-mechanical replacement, or even ways to grow a new limb back?
Acceptance is the road to recovery
Now the purpose of Autism Awareness Month is not to celebrate their struggles, but to celebrate their achievements and praise their efforts, no matter how big or small; and through this raise awareness and promote understanding and acceptance.
Through celebration comes acceptance, through acceptance comes understanding, through understanding comes knowledge, through knowledge support, through support treatment, and through treatment maybe one day improvement or recovery from one or more of their impairments.
But just because autism is hard for both autistic people and their families, why can we not celebrate their achievements? Why can we not celebrate the unique skills and talents they have, and the challenges many have faced, fought and in some cases overcome?
It’s precisely because of all the negativity they face, that we need to celebrate. From the day my son was born I have praised his efforts and his achievements. When he struggles to do things I support him, encourage him and help him every time he asks. When he achieves his goal, he comes running to me shouting, “Daddy, I did it!” I fling my arms around him, give him the biggest high five and tell him, “You see what you can do? You see how smart you are?”
And he goes back and does it again, but this time he doesn’t need my help. And every time he gets praised for his efforts and successes, the more he is encouraged to work harder at the things he wants to do, but finds incredibly difficult.
Now I ask you this, wouldn’t you also?
Some say that autism is just a difference, and it’s not something that needs to be cured. Some say the opposite. But whatever your opinion, the fact is that they need to be helped, supported, encouraged, praised for their efforts and their achievements celebrated, just like everyone else.
So, as well as trying to help and support them, how about instead of constantly focussing only on their inabilities, we focus more on their abilities? Why don’t we work to build their self-esteem and self-confidence through acceptance, praise and celebration of their achievements no matter how big or small? After all, it’s not just their deficits that need improving; it’s their skills and talents too.