Most people look up to their heroes; I’m raising mine! - (Autism Awareness Week)

Hello, 

I apologise if this briefly interrupts your working day, but I would love for you to know that the UN sponsored Autism Awareness Week commences today. 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 seven-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 ASC that society deeply demonstrates on a daily basis (see photos below - “the Look of Autism”). 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 L
• 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:

1-      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 :)

2-      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!

3-      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”.

4-     The Joshie-man uses an amazing piece of technology (proloquo2go) on his ipad which we call his "talker". It gives him a voice and allows him to communicate his wants, desires and feelings. Just yesterday he went on it to "ask" for all the ingredients in a chocolate cake, and expertly found chocolate, butter, sugar, flour etc, then made a sentence "I want cake". Truly his daddy's boy!

5-      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’ perception continue to change:

1-      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.

2-      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”.

3-      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”

4-      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 absolutely key how society deals with and reacts to these differences.

5-      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.

6-      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.

7-      Autistic children become autistic adults. Support and acceptance tends 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!

8-      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. Autistic adults often 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), Sir Isaac Newton (perhaps) and many more.

9-      There is no ‘look’ to Autism. Although sometimes well-intentioned, it’s not helpful to be told that Joshie-man doesn’t look autistic. Please have a quick look at the attached photos below (Image 1) and accompanying suggestions we have heard about the Joshie-man’s future; which he strives every day to disprove.

10-   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.

So, as I mentioned last year, I’m not able to prepare my child for our world; I’m here to prepare the world for my child.  

CALL TO ACTION:

1-      Please follow me on social media so we can amplify this awareness message: @DanielJHarrisUK (Twitter) and @Dan J Harris (LinkedIN)

2-      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

The “LOOK” of Autism (Image 1)

APPENDIX: Background to Autism Spectrum Condition

If I may, my top ten quick points to help with your understanding:

1.      Autism is a lifelong, developmental condition 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.

2.      Autism is much more common than many people think. Recent reports state that prevalence may be as high as 1 in 54 children. If you include their families, autism is a part of daily life for 2.8 million people in the UK alone.

3.      If you are a parent, please educate your children that Autism may mean their classmate is different, but not less. This is really important as often they are isolated, picked on and excluded from many activities which make life a happy one for other kids. 34% of children on the autism spectrum say that the worst thing about being at school is being picked on.

4.      The lack of understanding has consequences. Without understanding, autistic people and families are at risk of being isolated and developing mental health problems.

5.      The Autistic Spectrum is not a linear scale. Forget the “Rainman” film with Tom Cruise and Dustin Hoffman; a terrible cultural reference point for us! - see attached image 3 for an explanation of the Autistic spectrum.

6.      We are all different. Remember….once you’ve met one kid with ASC, you have met (just) one.

7.      What is normal? Please don’t describe kids without ASC as “normal”. My preferred term is Neurotypical i.e. having typical brain development. 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.

8.      Autism is a (often) hidden condition – you can't always tell if someone is autistic. While autism is a life-long condition, the right support at the right time can make an enormous difference to people's lives.

9.      Gender and ethnicity: Significantly less support and early diagnosis is afforded to females and those from ethnic minorities. We need to get better about supporting everyone equally.

10.   Remember the positives to ASC; being honest and straight forward, compassionate and forgiving, excellent memory and creative, less likely to judge others, unique thought patterns, may question norms, attention to detail, observation skills, distinctive imagination; see attached image 2 for an explanation.

 The positives of Autism

The Autistic Spectrum