Most parents prepare their child for the world; I’m having to prepare the world for my child (Today is World Autism Awareness Day)

Hello,

Sorry if this briefly interrupts your day, but I would love for you to know that today is the UN designated World Autism Awareness Day. I’m not asking for your money, but something far more valuable – for you to read this message, discuss it with your family (particularly if you have children), and to raise awareness of Autism Spectrum Condition (ASC). Through this, we will all help society progress more quickly in accepting Neurodiversity, so that autistic children and adults are able to live a happy, meaningful and productive life. This is within our gift - let’s do it!

Most parents prepare their child for the world; I’m having to prepare the world for my child

My little boy (“the Joshie-man”) is severely Autistic, non-verbal, and he is the light of my life. However, I profoundly fear for his future as society is not accepting of even such a delightful little chap. Did you know that 28% of autistic people have been asked to leave a public place because of behaviours associated with being autistic? That has to stop! One of the Joshie-man’s defining characteristic is an overabundance of happiness/joy – what is wrong with our society if people won’t accept, support and embrace someone like this?! Acceptance is a birthright; autistic people and their families have a right to feel included, comfortable and fulfilled in everyday life, just like everyone else.

Well, the good news is that we are changing society (and you are all part of that!); thus starting with the great things that have happened this year……

• The firm that I work for (and love), Deloitte, has been amazing and we will have exciting news to tell you about our Neurodiversity programme soon (see my email next year for a recap of what we achieved!). Neurodiversity is the diversity of human brains, the infinite variation in neurocognitive functioning within our species, or put simply, the different ways the brain can work and interpret information.
• Professor Baron-Cohen and his team are setting up the Autism Centre of Excellence which will combine excellence in both clinical practice and research in one place. This will be the first centre of its kind for autism in the UK and is an ambitious and exciting project which will reap massive rewards over a ten-year horizon. Peterborough and Cambridgeshire Councils are actively supportive and partnering on this ambition.
• My local MP has gone public in the House of Commons explaining that a central theme to his job will be to make Peterborough an Autism-friendly city. I’m supporting that and we will achieve that goal!
• Just yesterday, on our daily exercise trip outside the house, the Joshie-man said to me “I want Daddy throw stone” when we were at the river. This is a testament to the significant amount of Speech Therapy and Occupational Therapy he has each day. This is remarkable and whilst the sentence was not well annunciated, I understood him. This kind of usage of verbal language is very infrequent, but it shows what Autistic children can do when something really motivates them.
• In the classroom, he fully buys into the concept of work now, fun later. He has a fantastic work-ethic, (and works harder than anyone I know). This will be critical for his future, as hard work will help him mitigate some of the challenges he will face. At home, when his therapists arrive, he will lead me out of the room and grab their hands taking them to his therapy room - he loves to learn!
• Following my last annual note, I received a dozen birthday party invites from people across the country that I previously didn’t know (but locally he still has no ‘friends’ and has not been to any birthday parties).

I’d now like to briefly set out a few of the key challenges he faces, so that peoples’ perception continue to change.

• Concentrate on the positives. Yes, he may jump around a lot, and make some “unusual” noises, 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?
• Be kind and considerate: When we finally manage to get our annual trip to a restaurant as a family, please don’t come up to us in a restaurant and ask whether “we can better control our child” (in fact he was just really happy to be getting his favourite meal). If a child is hyper-active, demonstrating challenging behaviour or generally upset show empathy, and do not tell us make him be quiet, or take him home. Similarly don’t tell us to “move away” in the supermarket if he is clapping his hands or making his ‘happy’ noises. Don’t report us to the security guard!
• Please avoid laughing/pointing/staring. 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 that 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.
• Help support our growth. To those people who have told us: “we are better off keeping that kid at home”, actually every time we stretch our boundaries by giving him new experiences outside of the house, we make him more resilient and improve his ability to cope with the external environment. 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 and reacts to them.
• Encourage your child to befriend the kid in class who has no friends: explain why this is the right thing to do. Encourage your children to understand the concept of neuro-diversity and believe that just because certain children’s brains are built differently – it only makes them different, not less.
• Autistic children become autistic adults. Consider how in your career or as a leader in business you can support autistic adults in leveraging their unique skillsets (only 16% of autistic adults in the UK are in full-time paid employment).  I’ll focus on this in my next annual note, and tell you how UK Plc is changing.
• There is no ‘look’ to Autism. This is relevant to those people who have told us that the Joshie-man doesn’t look autistic . See attached photos by way of example.

 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.

So, as I opened with; I’m not able to prepare my child for our world; I’m having to prepare the world for my child.

It really means so much that you are part of this journey; thanks for your valuable time in doing so. Please follow me on twitter so we can amplify this awareness message: @DanielJHarrisUK

Keep safe and stay well.

Dan Harris

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.