Life can be unbearably hard for autistic people and their families; autism covers a wide spectrum of abilities. 25 per cent of those diagnosed as autistic have learning difficulties, which can be very profound and require 24 hour care.  Many have epilepsy. Many have no, or few words. Many self injure. Many cannot self care.

Throughout Autism Awareness Month, it is essential that as a society we discuss and share experiences of autistic people so we can be more aware of the challenges they and their families face on a daily basis. Even the smallest things we do and say can make a big difference.

Dan Harris, Supporter and Specialist Advisor of our charity, provides a personal account of what Autism Awareness Week/Month means to his family, as he celebrates his wonderful autistic son Joshie.

2 April 2021

Hello,

I apologise if this briefly interrupts your day, but I would love for you to know that this week is the UN sponsored Autism Awareness Week. My objective here is not to ask for your money, but rather, something far more important – to raise awareness of Autism Spectrum Condition (ASC) and for you to share/discuss this with your network, friends and family (and particularly so if you have children). By contributing in this way, we will help our society more rapidly mature so that autistic children and adults are able to live a happy, meaningful and productive life. We all have the power to make this change, so let’s start here, and let’s start today…

Most people look up to their heroes; I’m raising mine!

I am blessed to have a 7 year old son (called the “Joshie-man”), who is both the light of my life and also the hardest working boy in the UK! Additionally, the Joshie-man is severely autistic, and non-verbal. Being on the Autistic Spectrum is not our real challenge, but rather it is the lack of awareness of autism around us. I profoundly fear for the Joshie-man’s future as society is not accepting of even such a delightful little chap at his young age. If you consider that the predominate defining characteristic of the Joshie-man 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 basic human right; just like everyone else, autistic people and their families have a right to feel included, comfortable and fulfilled in everyday life. Why do we continue to accept these depressing statistics:

  • Only 16% of autistic adults are in full-time employment
  • 28% of autistic people have been asked to leave a public place because of behaviours associated with being autistic!
  • On a personal/family level; the Joshie-man has gone to precisely 0 (zero) birthday parties

 

This has to change, now! However, we must continue to be positive, and I can genuinely report that we are changing society, and many great things have happened this year; below being my top five:

  • Over the weekend, the Joshie-man jumped into a puddle and then ran over to me, purposefully held my head in his hands, looked deep into my eyes, and said “wet”. We’ve been working on this word for nearly two years! We would not have this type of progress without the significant amount of Speech Therapy and Occupational Therapy we privately fund each day. This verbal language is very infrequent, but it was amazing that this was not a ‘request’ type communication (such as ‘I want ice cream’) but him actually commenting on the world around him. We smiled for hours
  • With his full-time (1:2:1) Teacher Support Assistant helping him at school, the Joshie-man has a fantastic work-ethic (and works harder than anyone I know). 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!
  • The firm that I work for (and love), Deloitte, is trying to become a leader on Neurodiversity*. We recognise that significant change is required across UK Plc, and we are on a multi-year journey, but we are actively following the mantra “Be the Change that you want to See in this world”.
  • I am delighted to be supporting Professor Simon Baron-Cohen and his team as they look to combine excellence in research and clinical practice, and am excited about what will be achieved over the next few years
  • My local MP wants to turn Peterborough into an Autism-friendly city. He has been fantastically vocal on this in the House of Commons, and I’m delighted to working with him to achieve this goal.

 

Whilst I absolutely cannot talk for others in the Autistic community (and these are only my personal reflections), I’d now like to summarise my top ten challenges the Joshie-man faces, so that peoples’ perceptions continue to change:

  • Concentrate on the positives. There is a truly unique joy in a child who has such pure intentions and is not concerned with what others think of them, nor how their actions will be perceived by others. If only the rest of society were so honest we would all be able to live better together.
  • 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 may struggle with Sensory Processing Disorder (SPD). 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. Remember that “non-verbal” does not mean “non-hearing”, “non-thinking”, “non-feeling”, or “non-understanding”.
  • Offer support not critique: When you are in the supermarket, and a child looks like they are having a ‘tantrum’, don’t inform us that we are bad parents or should discipline the child. “Behaviour is communication. Change the environment and behaviours will change”
  • Help support our growth. To those said: “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 it is key how society deals with and reacts to these differences.
  • Allow us our small victories. Yes, it may seem strange that we erupt into applause in a restaurant and high-five when a new food is tried or when we get through the starter course without having to leave, but allow us these small victories. It might be inconvenient for you to hear the Joshie-man’s little (happy) noises when trying to enjoy your Big-Mac, but for us it’s the highlight of our day to have him happy for a brief while.
  • 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 neurodiversity and that just because certain children’s brains are built differently – it only makes them different, not less.
  • Autistic children become autistic adults. Support and acceptance tend to get even worse at that (oh-so!) magic age of 18 (sic) when a child becomes an adult. The person and the support required will not have changed overnight however!
  • Encourage and support Autistic adults into your workplace. Consider how in your career or as a leader in business you can support autistic adults in leveraging their unique skillsets. I’m delighted to report that UK Plc is changing. Some autistic adults can have a unique set of strengths and there are many famous and successful people with ASC e.g. Mozart, Albert Einstein, Andy Wharhol, Lewis Carroll, Dan Ackroyd, Satoshi Tajiri (creator of Pokeman) and many more.
  • There is no ‘look’ to Autism. Although sometimes well-intentioned, it’s not helpful to be told that Joshie-man doesn’t look autistic. 
  • We are part of society and have power. Anything we can do individually will have a massive difference on quality of life, access to opportunities (including a fair chance at education), ability to gain meaningful employment and generally the chance to lead a happy and productive life.

 

I’m not able to prepare my child for our world; I’m here to prepare the world for my child.  

CALL TO ACTION:

  • Please follow me on social media so we can amplify this awareness message: @DanielJHarrisUK (Twitter) and @Dan J Harris (LinkedIN)
  • Please share this message and discuss with your family and colleagues.

 

It really means so much that you are part of this journey; thanks for your valuable time in doing so. 

Dan Harris