For most people, World Autism Awareness Week and World Autism Awareness Day is something that they only have to endure once a year and for a maximum of seven days. There are countless days in the calendar where people are asking us to raise awareness for a variety of conditions and disorders. Which one do you choose to act upon and which ones do you really think are raising awareness? Does posting a heart or wearing a ribbon make you more informed about a particular cancer? And does “Lighting it up Blue’ give you all the facts you need to know to make an autistic person’s life a little easier?
This year, I didn’t want to just change my picture to one of Joseph and me and tart it up with a blue background, I wanted to give my social media followers, a series of short snappy facts but relate them to Joseph and our lives.
You see, autism for us is not just for one day or one week. Autism, the awareness and acceptance of it is 365 days a year and we can never pull down the shutters on it. It’s not something I can politely ignore because it doesn’t affect me or I can hide the feed as it’s not a come good story. Life for us has its ups and downs and I try and tell it exactly how it is. No tarting it up and no playing it down. That may be too much information for some people but unfortunately, it’s not something I can choose to ignore.
Some days I could absolutely kick the shit out of autism and there other days where I want to fist pump the air because of the small wins that I choose to celebrate. I am not that parent who wakes up and is grateful for having autism in our lives; I know the challenges it brings for us all. Joseph is my absolute joy but also a great big thorn in my side (and not all of that is due to his autism!) We get on each other’s tits but we both find each other funny. What I should actually say is, in my mind he finds me funny.
Autism is not about Rain Man and it’s not always your success story of an articulate person who manages to sit exams and is fortunate enough to find employment. There are many different dimensions of autism and we are living just one. My aim for the blog was initially to spill my guts (my friend told me it was cathartic but I still haven’t googled it and I am certain it’s just another word for being a knobhead) and hopefully raise some awareness along the way. As it progressed, my intentions changed and my ambitions grew. I have received so many messages in different forms that I carried on beyond a point I thought I could.
On my last post Can You Tell Me How To Get To Awareness Street? I spoke about Julia the Sesame Street character with autism:
If Julia sticks around, she won’t be the character with autism; she’ll be Julia, another character on Sesame Street. When TV showed a kiss between a same sex couple, everyone got a little excited. Times have moved on in every sense and in the future, a new character with autism on TV won’t be splashed across everyone’s newsfeed. And at that point we will know that we are accepting and autism aware.
I have never wanted any sympathy, just acceptance, awareness and maybe a few facebook likes. I feel privileged to have shared our journey with you and I can honestly say that I don’t know how long it will continue, it may reach a natural end some point in the future. Maybe the future is not having blogs and pages like my own as autism will be so much of everyone’s life and rightly integrated into society. Autism will be with us for a lifetime, all I would ask is that you listen, learn and see the person not the condition. And that actually goes for any disability.
For those not on facebook, below is a summary of the posts that I have shared this week. Scroll down, you never know you may have missed one or may learn something new!
World Autism Awareness Week
When I first started my steep learning curve into autism, I saw the spectrum as linear. Even now, I still get people asking me how far along the spectrum Joseph is. I’m not sure what the correct answer is?
“Just past point number 4”
“More than a little bit autistic”
This comic strip illustration does a great job at explaining the spectrum and how autism impacts people in different ways.
Open your minds beyond a line 😊
Autism is a lifelong development disability that affects people in different ways.
I have heard people say “Everyone’s on the autistic spectrum to some degree”. Liking routines, having a good memory or being shy doesn’t make a person autistic and can be offensive to those living with autism every day.
Autism wasn’t at the top of my agenda before Joseph was diagnosed and I appreciate it may not be at the top of yours.
The video I have attached takes just five minutes to watch but is an amazing way to explain autism to children and adults. Please watch it and share it with your children, you might just make a difference to an autistic person’s life.
How should your refer to someone with autism?
Person with autism
Person with ASD/ASC
Some of these terms are preferred by the parent and different preferences often come from the person with the condition.
You will find that some people don’t like the term ‘disorder’ and some prefer ‘condition’
My personal preference when referring to my son is to use his name 😊
Everyone, meet Joseph 😊
People with autism can struggle to form friendships due to difficulties with communication and understanding of social rules.
This is not to say that they will never have friendships, relationships and close bonds. Joseph has shown progression with these skills and is now initiating conversation with those around him and shows more interest in playing with friends rather than just alongside them.
Sunday was all about the red hoodie. For weeks Joseph has refused to wear it and I had no idea why. Various suggestions had been made about colour, tags, texture and I wasn’t having any of it. He’d worn it before no problem and had an identical one in green. Even worn another red hoodie.
But on Sunday, he told me “there’s hairs on it”. I realised there must have been tiny hairs on it from when he’d had his hair cut and that was why he wouldn’t wear it. I assured him they were now gone and he then got dressed.
Being autism aware is about opening yourself up to possibilities but not making assumptions and stereotyping. I quite easily could’ve done so and never pushed the issue. It’s also about accepting your child is still a child and will have similar thoughts and feelings to children without autism.
Joseph 1 – Hoodie 0
Joseph was the only one who wanted to sort the jungle out. He insisted on being filmed whilst he was doing it (certain this is so he can watch it back again and again…). So a watching you watching me video really!
Joseph loves the loud noises of the garden equipment and asked for a chainsaw and a strimmer for his birthday 😱
Disclaimer: The Sleep Thief was fully supervised during his unpaid labour!
Thanks for getting to the end 😊