World Autism Acceptance Week – A personal guide to supporting someone on the Autistic Spectrum
World Autism Acceptance Week – DGP’s Kevin Ford, works alongside Mick Doyle as a construction logistics consultant and has a dependent son, Joshua who has Asperger’s Syndrome. He shares an insight into what it’s like living and supporting someone on the Autistic Spectrum and the key lessons he has learnt.
Kevin is his Appointee, which means he acts on his behalf with his benefits and health care appointments etc.
Kevin explains, “Living with ASD (Autistic Spectrum Disorder), at whichever level you have it, is challenging for most and can be equally challenging for their family and friends. I’d personally suggest it’s harder for people who don’t know the person affected to understand and support when needed. As with any hidden disability, it rarely comes with a huge flag waving over them telling you what to expect. Indeed, for Joshua, I can only recall one person who recognised something in Joshua and offered him her seat on the tube.”
So, how do you support someone with, or the family of someone on the Autistic Spectrum?Read Kevin’s full personal account below:
How do I tell if someone has Autism, and will it affect me?
It’s vital for people to understand that once they’ve met someone with ASD, they have met one person with ASD – each person and how they are affected is as unique as their fingerprint. Elon Musk sits at one extreme end of capability whilst our friend’s non-communicative daughter with Down Syndrome and Autism sits at the extreme opposite end.
Whilst no one has to wear a badge to say I’ve got ASD, take your cues from their behaviour; do they like a quieter area, how do they respond to change, do they obsess about something?
Joshua is an absolute film and trivia buff and absorbs information to extreme detail and can tell you what episode and season of The Simpsons it is but couldn’t care less about being clean for example.
For yourself, take a moment to think is ‘something’ going on here, does it matter? (probably not, unless they may be unsafe), store it as a reminder for the next time you’re with them and carry on as before taking any cues you can from them.
Diagnosis
We can all tell tales of children who we just think of as being naughty but look at what causes the disturbance. Have you/someone suddenly said ‘right, we’re going out, now!’ or having planned an activity suddenly stopped it?
Unplanned change is a huge trigger in people on the spectrum. For a DGP employee, this could be setting an assignment and then changing the task abruptly. How do they cope/respond?
If you do have concerns, as with pretty much any illness for a child (in the majority of cases) seek a referral and keep pushing until you get that meeting with an appropriate Consultant.
It happened to be a friend of my Wife who asked if Joshua had been diagnosed and as Joshua has an extensive medical history, I suspect we got seen quicker than usual and by someone that had known Joshua since he was a baby.
Assessment
You’ll probably be asked to keep a diary of your child’s behaviour patterns if you’re at this stage.
It’s vital to be honest and record the proverbial warts and all. As with claiming benefits, assessments have to be made on the full facts and not the nice facts. If you have a daughter that you think has Autism, this is likely to be harder as girls are typically more private, even within their family.
If a child can’t or won’t do something, their peers can, say their hair for simplicity, ‘they’ haven’t done it if you stepped in and did it for them.
When you go for assessment, be sure to let the child to answer the question first as the Consultant needs to hear from them. You’ll be asked in good time.
Post-Diagnosis Support
Diagnosis alone is a huge ‘win’ moment followed for most by a tumbleweed scene of Government and health authority support. Just knowing that you/they have a diagnosis, changes everything. You know how to try and manage change, you can learn cues for causing upset and indeed, how to calm down and you know that you or they are not ‘mad’ or a naughty boy etc. Knowledge gives you the power to manage it as best you can.
As for Government or health authority support, this is where the tumbleweed comes in and I’m afraid this is the stark fact for many people diagnosed with Autism and their families.
You’ve been diagnosed now get on with it… Formal support is minimal at best, although we did attend a 6-week course run by our health authority with other families which covered issues around change and fidgeting and obsessing with items. It’s important to make sure family and friends etc. understand the key points from this.
For support at work, think about how meetings are planned, how people are given a voice (or it’s drawn out of them tactfully), how you plan team events etc. As with Ramadan coming up and thinking about how you may eat in the office etc. think about how little changes can help someone without making an example out of them.
Appointee you say?
Autism can severely affect someone’s ability to make reasonable and appropriate choices (and no, I don’t mean Elon Musk’s Twitter account!). This isn’t about what film they watch or what singer they like, but very fundamental choices about hygiene, physical health, money and housing etc.
For our son, if he can’t be trusted to consistently flush the loo because he ‘forgets’, is he safe to use a gas cooker for example? With the amount of spam and phishing will they be OK to avoid being caught? If they are eligible for financial support but can’t or won’t make the right decisions, a family member or suitable other can be made an Appointee and the DLA or PIP team can initiate this.
The lady was in our home for less than 5 minutes before she was signing bits of paper!
Covid and Post-lockdown
Whilst a vast majority of people truly hated the changes that came with national lockdowns, Joshua truly was out in front taking Gold for strictly adhering to not going out, including not even to the garden. He is actually more upset by the increased push to get out and exercise more.
Whilst many have suffered genuine mental health challenges through the pandemic, his stress is coming now. As I said, each person with ASD is unique and genuinely surprise even those closest to them.
A final word – talk
Talk to whoever is affected, don’t hide from it as a stigma and reach out to the plethora of supportive charities etc. that are literally waiting to help you.
