Richard and Jaco: A Life With Autism

I watched BBC One’s Richard and Jaco: Life With Autism last night.

As a parent, I am able to identify with Welsh actor Richard Mylan’s fears for his son’s future.

As an autistic person, I understand Jaco’s world.

My son will be eight this year but does not have the ability to mask his autism as I have been able to do. Like Jaco, his autism is obvious. He wandered in while I was watching it and saw Jaco wearing his headphones. He said “Look mummy, that little boy looks like me!”

Richard impressed me with his desire to understand his son’s world even though it’s impossible for people to truly understand what they don’t experience themselves. However, Jaco is a lucky little boy to have Richard as a dad and the love he has for his son is a beautiful thing to see.

You get a view of what life can be like with an autistic child like Jaco. He reminds me so much of my own little boy, as in,visibly uncomfortable with environmental stimuli but happy in his world.

In order for him to learn more about Jaco’s future, Richard went to meet various people on the spectrum. First he met Alex Lowry who is a motivational speaker and trainer on autism. An animated man, he is obviously passionate about what he does.

Although Jaco started secondary school and was happy, Richard was interested in finding out about special schools. In one such school he met two teenagers who had been tasked with the job of showing him around. One boy told of the bullying he’d endured in mainstream school culminating in a broken arm and the other told of being ‘kicked out’ of school for being ‘naughty’. Both struggled in mainstream but both spoke highly of the special place where they are understood and most importantly, happy.

Then there was Edward who is severely autistic and in residential care. He is a young man who is happy in his own world and who has a great support network. He, like every other autistic person, does not know what ‘normal’ feels like. All we know is our normal. Ed has an amazing memory and can tell you what day your birthday was on when you were born in a matter of seconds. He is a fascinating person.

Ed’s mother by her own admission has taken a leap of faith in allowing him to live independently but said, “You have to let your kids go don’t you? You have to let them grow up and be independent”.

Bottom line is yes, we do.

The person who struck me the most was the young man who Richard visited in his workplace. This man was literally living his dream of doing admin. Yes, admin! The job that so many people loathe. Yet, he was happier than a pig in muck sorting through all the letters and stuff. What’s more, he is a valued member of the team and according to his boss, contributes to the happy and relaxed atmosphere of the office. What choked me up was when he said to Richard, “If I didn’t have autism, I wouldn’t be as special.”

Richard said “So you see it as a positive thing?”

With eyes that twinkled (and bloody good eye contact thank you very much) the young man replied, “Yes. autism is a very special thing and whoever has it should be proud of it”.

I am proud of who I am and I want my son to be proud of who he is too.

The Boy and I have the same problems but we react very differently. I am an autistic person raising an autistic child and I know how important these next few years will be for him. I can’t sit back and do nothing because he will be a teenager before I know it. I have to prepare my son for a life without me and I have to do it now. I can’t guarantee that his secondary school experience will be as positive as his primary one but I will be watching closely and if he’s unhappy, I will have NO problem in placing him in a special school, especially after seeing how happy those lads were.

My passion comes not only from being his mum but also my years of suffering in mainstream. I know, without a doubt, that I would have been happy in a special school tailored to my needs. With the confusion and crowds removed, I would have thrived instead of having just about survived. However, my time has long since gone. It’s my son’s time now..

I want him to have a relationship. To be able, not only to work, but to be appreciated for his contribution to society. Ultimately, I want him to be able to live independently of us. Don’t get me wrong, I dread the day coming when he no longer needs me but that’s also the day I’m aiming for. It’s what every parent aims for. Sadly, some people are too severely affected for total independence to be an option.

More than anything else in this world, I want him to be happy and to embrace his differences, not hide them as I have done.

We, as parents, do the best we can for our children. We give them the tools they need to survive and they take what they’ve learned out into the world. With autism, the work starts earlier. It has to. Richard Mylan knows that. I know that. Most autism parents will understand that. Another thing that unites us all is the fear of not being here for our special children so we do the very best we can while we are still around.

Thanks to Richard and Jaco for a glimpse into your lives and for helping to spread awareness.

Richard and Jaco: A Life With Autism is on BBC iplayer for one more week. Well worth a watch, folks.

Spectrum Sunday