I raced home from work today to catch ‘Loose Women’ since it’s not every day that autism gets a shout out, especially in the form of stunning Christine McGuinness! What struck me was not only how little the panel and I am assuming the general public really knew about what it might be like to take a simple trip to the shops with an autistic child, but also the fact that it’s not something people who do not live with autism in their families ever really think about, why would they? I certainly didn’t think about it, at all, until my third child was diagnosed age 3 and I absolutely do know that in the past I too must have cast those judgemental looks at both child and mum thinking it was bad parenting and bad behaviour. How shocking that seems to me now.
Oh, the things people have said:
- “He can’t be autistic because autistic people don’t have a sense of humour”
- “He can't be autistic because he’s not banging his head against the walls”
- “Sure, he’s autistic, that’s everyone's excuse these days. You’re a sh*t mum and he needs discipline”
- “Have you given yourself time to grieve for the son you will never have” !!!!!!
- I say “he’s non-verbal,” They say “But he likes his special school?” I say “I don’t know, he’s non-verbal”
- “Sorry, the only thing I know about autism is the Rain Man”
- “I am so sorry for you”
- My son in full-blown autistic meltdown (very different from a tantrum) on an aeroplane and irate lady coming over to say “You could have at least prepared and brought some snacks and distractions like stickers or an iPad for your child”
Funny that I can never forget these although the stares and judgemental looks hurt me way more and they happen almost every time we are out in public with our youngest son Henry age 7.
People might ask what the relevance of an autism hour is. If autistic children prefer to be in their comfort zone at home then why take them out to places that cause them so much anxiety? As parents to autistic Henry we feel very strongly that the journey towards his independence starts right now and making a simple trip to the shops, GP, bank etc. is going to take decades to achieve in terms of exposing him to the experience in small measures until he can understand, cope and hopefully one day enjoy doing by himself. And if not by himself then he deserves the chance to go out shopping for his basic needs just like everyone else, with assistance and without becoming overwhelmed.
We feel that we and our other children deserve to be together as a family once in a blue moon in a public place enjoying an event or a meal out and you have no idea how much hard work this involves when it comes to autism. When we do achieve it and it’s a success (there have been many disasters) it is such a wonderful, bonding, heart-warming and thrilling experience for us.
That’s literally what a bowl of chips and a drink at the pub together as a family with less than 3 stares can do for us.
Dimming lights, turning down volumes, reducing noise levels (coffee machines, electric hand driers etc.), regulating temperatures and odours where possible can go a long way towards helping an autistic person cope. Usually, all it takes is that first trip or a new experience to go well in order for future visits to be easier and more enjoyable as autistic people will take in the visual aspects and every minute detail almost photogenically to be stored in their astonishing brains.
Autism is not visually recognisable and it takes courage to approach someone who has cast a judgmental look to explain that your child is autistic. All too often we apologise for it, and we should never ever have to apologise for it, nor be made to feel as though we are constantly labelling our child by telling everyone who stares at us …” sorry, he’s autistic…” Paddy McGuinness phoning in on the show today was so emotional and gave us a hint of how difficult autism can be for parents and a marriage (something like 80% of parents with an autistic child separate).
Hurrah for The National Autistic Society and many other charities working tirelessly to support families and raise awareness and a massive thank you to “Loose Women’ who you could tell were genuinely moved, interested in learning and committed to ‘Autism Hour’. And of course to Christine McGuinness for being so brave and honest and real.