Embrace, accommodate and celebrate this World Autism Awareness Day

Hello,

I’m sorry if this interrupts your day a little, but I wanted to let you know that today is the UN designated World Autism Awareness Day. I’m not asking for your money, but something far more valuable; it would mean a lot if you were able to read the entire message, bear it in mind going forward and discuss with your children/family. My aim with these annual messages is to raise awareness of Autism Spectrum Condition (ASC), but also to help in the progress of society better accepting Neurodiversity so that such children and adults find it easier to live a happy, meaningful and productive life. Thus the tagline would be Embrace, Accommodate and Celebrate

By way of introduction, my little five year-old boy, “The Joshie-Man”, is severely autistic, non-verbal and suffers significant challenges in understanding/coping with the world around him. At the same time, one of his defining characteristics is an overabundance of unencumbered joy. This year has been one of both big wins but also very difficult times for him. It’s important to always be optimistic, so starting with the great things that have happened this year…….

• We found out that he is a future Olympic swimmer and has no fear around water. A skill we will work on in the years ahead.
• At school when his “work” is over he will physically pull his teacher back to his workstation. He has a fantastic work-ethic, bless him! That will mean a lot for him in his future, as hard work will help him address some of the challenges he will face.
• Following my last annual note, I received five birthday party invites (!). That was amazing given we have not received any previously or since, and demonstrated the kindness that is out there!
• His love of bacon has grown and we will often have a daddy/son fight over who gets the last bit! :)
• He jumps up and down with excitement when one of his therapist arrives at home, taking their bag of toys to his therapy room and closing the door :)
• He pretty much knows the entire road layout of our home city and whether we are going home (bad!), or to a therapist (fun!)

Please allow me to briefly set out a summary of some of the key challenges, so that peoples’ perception continue to change.

• Be kind and considerate: Don’t come up to us in a restaurant and ask whether we have fed him after midnight (a reference to the 80’s film Gremlins). If a child is hyper-active, demonstrating challenging behaviour or generally upset show empathy not tell us to quiet him down, or take him home.
• Don’t laugh at us. When a child is so distressed that they feel the need to bang their head on a wall, that is really not the time to point and laugh. They are not attention seeking but rather struggling with Sensory Processing Disorder (SPD).
• Remember – behaviour is communication. If you can see how upset a child is externally, try to imagine what is going on in their brain to make them react that way. My little boy is not naughty but is dealing with a world he struggles to understand.
• Focus on the positives. Yes, he may make unusual noises, and may jump around a lot, but he has totally pure intentions, has no ego, demonstrates no ulterior motives and simply doesn’t care what others think of him. What would society be like if we all acted this way?
• Allow our growth. Don’t tell us we are better of “keeping that kid at home”. Actually every experience outside the house gives him more ability to cope with the external environment and provides teachable moments. The reason that this is so important is that some kids never speak (some do), some display their outward differences throughout their life (some start to find coping mechanisms); but the key thing I’ve found is that it’s not just the Autism which caused the kids a challenge in life, it’s also (mostly) how society deals with them / reacts to them.   
• Encourage your child to befriend the kid in class who has no friends, explain why this the right thing to do and they will grow up being accommodative of differences. For those with children, encourage your children to understand the concept of neuro-diversity and understand that just because certain children’s brains are built differently – it only makes them different, not less.
• Autistic children become autistic adults. Think about how you, in your career or as a leader in business can support autistic adults for their unique skillsets (only 16% of autistic adults in the UK are in full-time paid employment, and only 32% are in some kind of paid work).
• Please don’t tell us that the Joshie-man doesn’t look autistic – there is no look to Autism.

Please note that there is no suggestion that the above applies to you, but rather more generally, how can society better support neuro-diversity. As we are all part of this society anything we can do individually will have a massive difference on their quality of life, access to opportunities (including a fair chance at education), their ability to gain meaningful employment and generally their chance to lead a happy and productive life. They just want to be happy like we all do.

Well….. mission accomplished (!) – you’ve read this far, and I wanted to re-iterate that it really meant a lot that you spared your valuable time in doing so. Thanks so much.

Dan

Background to Autism Spectrum Condition.

If I may, a few quick points to help with your understanding:

• Autism is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them. Correctly described the condition affects people across a Spectrum (Autism Spectrum Condition, ASC), so everyone experiences it individually.
• Autism is much more common than many people think. There are around 700,000 people on the autism spectrum in the UK – that's more than 1 in 100 (in fact in the US 1 in 68 are diagnosed with ASC; I think down to better diagnosis/investment). If you include their families, autism is a part of daily life for 2.8 million people.
• Without understanding, autistic people and families are at risk of being isolated and developing mental health problems.
• Autism is a (often) hidden disability – you can't always tell if someone is autistic.
• While autism is incurable, the right support at the right time can make an enormous difference to people's lives.
• 34% of children on the autism spectrum say that the worst thing about being at school is being picked on.