Autistic people have changed the world, now the world has to change to understand them, writes Deborah Brownson
When both of my sons were diagnosed, the language that was used to explain their autism was so negative and old fashioned that it did little to comfort us as worried and anxious parents. Using phrases like “life-long disability” and “triad of impairments”, suggested there was something wrong with being autistic, that our sons were broken in some way.
After being signposted to autism charity websites, support groups and text heavy books full of medical jargon, we were crippled with worry as to what the future would hold for them. At that time, an autism diagnosis felt like a menacing dark cloud trying to block out any sunshine from our lives.
Whilst we were privately coming to terms with the diagnoses and trying to understand how to help our sons, we also had to endure the seemingly never-ending judgmental stares and hurtful comments when one, or sometimes both, of our boys had meltdowns in public. A disastrous start to primary school only made things worse: my happy, energetic and bubbly son was labelled as “naughty” and “refusing to follow instruction”, rather than being seen as a scared, overwhelmed vulnerable child, who was unable to comply. This led to my five-year-old son almost having a breakdown.
A common problem
Sadly, my story isn’t unique. Right now, autistic people and their families throughout the UK are on their knees, struggling just to get through each day. Many feel isolated, misunderstood and unsupported as they battle mental health issues. They feel let down by the education system and the NHS, prevented from entering the workplace by outdated recruitment processes, and overlooked by the Government.
So is the situation hopeless? No! The answer to turning this all around is available to each and every one of us. All we have to do is change the way we view autism. I believe the root cause of many of the issues autistic people face today is that the global perception of autism is so negative.
I’ve always been a very positive person, free thinking and determined. This wasn’t the life I had planned for my sons. Autism didn’t define them, it was just a small part of what made them who they are. I started to distance myself from anyone or anything that painted autism in a negative way. I realised that for my sons to thrive, everyone around them needed to understand what autism was and that this had to be done in a positive manner, to bring about much needed change. Having misconceptions about autism is much worse than having no awareness at all.
Although any statistics on the prevalence of autism are fundamentally flawed, it’s currently thought that around one per cent of the global population has autism. That’s roughly 75 million people. If you add to this all the undiagnosed adults and children, this figure could perhaps be doubled or even tripled.
If we stopped telling these people they are disabled and supported them so they could thrive, can you imagine the difference they would make to the world?
Many people believe that history is full of brilliant autistic thinkers who have shaped our understanding and changed the way we live today. Psychologists have argued that some of our most celebrated minds – Leonardo Da Vinci, Darwin, Newton and Einstein, for example – may have been on the autistic spectrum.
It is widely accepted that California’s Silicon Valley, which drives much technological innovation today, employs a high proportion of autistic people. These people see the world differently and are not bound by social etiquette, which allows them to focus completely on their chosen field. Their obsessive passions mean they become gifted at very young ages. These people aren’t disabled, they are changing our world.
It’s time we got rid of the old fashioned terminology around autism so that new families receiving a diagnosis start out on a positive new journey of understanding.
Autism is simply a differently wired brain. In some areas, autistic brains have developed much more than the neuro-typical brain; where this occurs, the autistic person may have great strengths and might sometimes be gifted in those areas. In the areas where the brain hasn’t fired as well, the autistic person will have difficulties with those functions. This explains why everyone on the spectrum is affected differently and to different degrees, as it all depends on what happened in that person’s brain as it was developing. There is nothing broken. There is no cure needed. It’s just a differently wired brain. It’s no big deal.
Every person on the planet has strengths and weaknesses which they can work to improve; autistic people are no different. If we as adults develop a better perception of autism, this will pass on to those who are diagnosed with it. When we stop trying to change them and try to understand and support them in the ways they need, they will thrive.
Overhauling the system
Most autistic people learn in very different ways to neuro-typical people. They may also have to cope with sensory issues, be unable to sit still or be quiet, as this is just the way their body is made.
A radical overhaul of the education system is needed to take account of neurological differences. Autistic people are the square pegs. Our school system seems to want to try and place the square peg in the round hole but all that happens is that the peg gets damaged. Our Government needs to give adequate funding and resources to the many amazing schools and teachers out there who have taken it upon themselves to turn this around. Good practice needs to be shared so that the travesty of today’s “postcode lottery” for autism support dies away.
I want to live in a world where autistic people can celebrate their differences and be proud of who they are. Autistic masking, where autistic people try to fit in and be “normal,” is draining and leads to mental health issues. Currently, one in three autistic people suffer from a severe mental health difficulty and this needs to stop.
So next time you see an autistic person struggle, before you judge, shout or get frustrated, try to really understand how they are feeling. Remind yourself that they are having a hard time, not giving you a hard time. Work out what they are struggling with and help them get around it. Never say they can’t do something, say they can’t do it right now, but help them work out how they can. With support, love and patience, autistic people can thrive. Remember that when you talk, you are only repeating what you know; when you truly listen, you may learn something new.
Deborah Brownson MBE is an author, campaigner, speaker, online support group founder and consultant. She is the author of He’s Not Naughty! A Children’s Guide to Autism, and represents parents on the All Party Parliamentary Group for Autism: