An autism support worker can make a huge difference to autistic life. Believe me I know this because, at the age of 6, I was introduced to an autism support worker who changed my life. Rather confusingly he was also named James or Big James (a title which only got more confusing when I shot up like a bean pole) and recently I had a conversation with him to reminisce and to understand how he came to be such an instrumental figure in the development of the man you see today.
In the following interview, we spoke about some of the more challenging topics surrounding autism support work, like dealing with problematic behaviour, as well as how to find support and the rather harsh reality of keeping it. However, keep in mind that, as with everything difficult in autism, there is always a silly side to the serious – something which I’m sure you’ll find in James’s (Big James’s) remarks.
Part 1: What is a community support worker?
Me: So first, what was your role and how did you fit into the autism community?
James: Officially, it was a community support worker – that was my official role. You always called me a ‘childminder’ – I don’t know why.
As far as autism goes, the main autistic kids I worked with were you and a boy called Tom. Everyone else had other disabilities, like Down’s Syndrome or mobility issues. Some people I helped were simply dealing with grief after experiencing things like a death in the family. I would be given clients by my employer and they would say that they have someone who needs 4 or 6 hours a week, where we’d do things like go for walks, meals or other activities like you and I went horse riding and even Alton Tower. I must have gone swimming at least 3 times a week – which was a nightmare with you, as you use to call me an old lady and jump on my back to try and drown me.
Then it could be life skills, like learning how to get on buses or learning how to get away from the PlayStation.
Me: So obviously there’s a lot to be gained from the people you look after, but what about the families, what did the families get out of it?
James: For parents with autistic children, it can be much harder work. It’s harder for the entire family and having someone who understands what that family is going through and can take the child out safely, is good for the child but also gives that family a getaway.
Lizzie [my sister] benefited an awful lot from me taking you out because it meant that she could have some quality time with your mum, whilst you were off the scene. Not that you were all bad and she was better without, it just meant that she could have friends around without you running in naked.
Me: And trying to pee on them…
James: Yeah! That wasn’t unusual though, a lot of families have similar stories. They can’t invite people round or they can’t have friends over. Those brief moments of respite mean families can recharge and carry on again.
Me: Definitely and I think for my sister that meant for a few hours a week she would stop being the sister of an autistic boy and start feeling like a daughter again.
James: Exactly because she was also a carer and she was only a couple of years older than you. That must have been hard. I suppose you could speak to her about that in length [part of which can be found here]
Part 2: How to get an autism support worker
Me: How would you decide on how many hours each client receives? Was that based on their needs?
James: It was never my decision. It’s down to the needs of the family and budget available – there would be different levels of funding for different levels of care.
Me: So is that how it works? It’s a package that you buy? – I didn’t even realise that!
James: Pretty much. So you’d get a chunk of money from Social Care or wherever and that money would be used to buy carers in. So basically where I worked was like a broker and I was an agent and they would send me out to wherever the need was.
Me: So when someone has decided to get some help, where do they look? where should they start?
James: I think Social Care is where go first but, quite often, it will get picked up by schools and they will advise you. But nothing will be offered, you will have to be prepared battle for everything and how much funding you get sometimes depends on how much you fight for it.
You can’t just say ‘my son/daughter is autistic and it’s difficult’. You have to say exactly why it’s difficult and you have to give examples. Then every year you have to fill out forms and sometimes go to panels and meetings to plead your case. It’s even more work for the families to do and it comes with guilt – having to say they can’t cope.
I remember one story, there was a review meeting and the parent had got wind that they were thinking of changing the funding and support, so they knew that it had to go badly and if they could show a picture of what their child was like on a bad day they knew that wouldn’t happen. So the parent, questionably, went to McDonald’s drive-through, queued up, got to the window, didn’t order anything and drove off. The kid lost it, they just wanted their Happy Meal and then they were driven straight to the meeting and Social Care really got to see how things were. The funding was kept.
Unfortunately, this happens. People only get a very narrow window to prove that things can be that challenging. So, unless you’re very articulate or good at bringing evidence, then you’re not going to get it. You have one day, one moment a year to put your point forward and it’s not fair. The parent might not have had sleep that night because of the dread around of the meeting and then they go in and do a bad job and it’s gone. I don’t recommend the McDonald’s route though, but I do understand.
Part 3: What you might not know about autism support work
Me: So when people are trying to get the financing, what do the fees cover? You said before it covers the service but, say we were going to the cinema or getting on a bus, who would pay for that?
James: That was usually your mum and, for others, it would also be there families. A lot of the time I would also fund myself, so your mum would pay for you to go to swimming but then the hot chocolates we have after that or a Pot Noodle would be from my own money.
Me: I did not know that!
James: It’s why we would often do one big thing, like the cinema and then lots of free things, like a walk in a park – where you would probably fall in a river over and over.
Me: You mean when I would fall in a river trying to jump over and then I would ‘fall’ in a river over and over again. Gosh, the amount of times you would have to take me home in just my pants and a towel… probably can’t do that anymore, there would be an inquiry!
But, speaking of awkward situations by rivers, I also wanted to know how you learnt to deal with situations which turned violent? I distinctly remember a time when I was younger and I chased you down the banks of the River Mersey, trying to beat you with a stick. As a ‘community support worker’ how are you expected to react in these circumstances?
James: To be honest, initially I didn’t have enough training. A lot of it was instinct, but then you learn from experiences and certain jobs did provide good training in that sense. I also worked for companies later who did provide training and that came in handy in stopping you from hurting yourself and others… until you found a way around it and then it was back to reacting out of instinct, to keep you safe.
Me: So would you say that if there was someone who displayed some aggressive behaviours, would they be picked and paired with someone who knows how to handle it or is it a case of hoping that two are prepared for each other?
James: Yeah, it’s quite scary though, because you will see little kids paired with big beefy blokes just because they look like they can handle aggressive behaviours and that isn’t the way forward. You need people who are good with a softer approach. I’m not sure though, I mean I’ve been hit more times than I can count and have got into some really hairy situations, but it’s all part of the job.
Me: So is it more on the worker to be aware of what they may face or does the parent have a responsibility to outline what could happen?
James: Personally, I never really liked some of the written accounts, as they weren’t always accurate. There was this one example of a kid who played with matches and he accidentally set fire his curtains in the lounge. After that, he was permanently recorded as an arsonist, but he wasn’t an arsonist he was just mucking about. I always preferred just meeting the person and getting to know them.
Of course, there were certain things I did need to know: obvious dangers and triggers. Like my cousin, he is autistic and he loves riding his bike, but he wants to ride his bike everywhere. If he sees a lake or a reservoir, he will ride it straight in, just to see if he can. So, if I was his carer, I would want to know to stay away from duck ponds.
We also had one girl who was lovely all the time but if she heard canned laughter on a TV show, like the backing track on Friends, she would become distressed and just start punching everyone. Little things like that need to be shared if it’s going to cause a physical response or even if it’s to avoid an emotional one.
Me: On that note then, what other information do you need to give a carer?
James: Likes and dislikes. What sort of stuff their family member would want to do. You don’t want to take someone out and do all the things they hate because they’ll never want to come again. It’s got to be positive experience for everyone or it won’t work.
Part 4: Why do families NEED autism support workers?
Me: So this last one is a bit of a toughie, but I think there’s a real worry that parents who get support feel like they’re just dumping their child on someone else. What would you say to people who think that way?
James: I would say it’s not, but of course you are going to feel that way. It’s different though. For parents with autistic kids it can be much harder work. It’s harder for the entire family and that’s why, having someone who understands what the whole family are going through, and can take the autistic member away safely to do something they enjoy, is a huge benefit to everybody.
Your Mum needed a break, families need a break. It’s not about dumping… it’s sharing the load. It’s also having someone you can offload to. Your mum used to chew my ear off sometimes, telling me about all the things you had done in the week and what was stressing her out. Having someone that understands is one part of it but, also, it’s knowing that that the family member is safe and okay with them. Parents need to realise that they are not sending them out aimlessly with a stranger just because they’ve had enough.
Carry on the Conversation:
I would like to take this time to thank James for his incredible input today. At the risk of sounding like a clichéd afterschool edu-tainment show, I learnt a lot from the topics discussed here and I hope you all did too.
If you would like to hear more about autism support rights, then you might be interested in checking out this article on Autism & Homeschooling: What you NEED to Know.
As always, I can also be found on Twitter @AutismRevised, on Instagram @autisticandunapologetic and via my email: AutisticandUnapologetic@gmail.com.
If you like what you have seen on the site today, then show your support by liking the Autistic & Unapologetic Facebook page. Also, don’t forget to sign up to the Autistic & Unapologetic newsletter (found on the sidebar on laptops and underneath if you are reading this via mobile) where I share weekly updates as well as a fascinating fact I have found throughout the week.
Thank you for reading and I will see you next time for more thoughts from across the spectrum.
