THE ONE WHERE GARETH AND I TALK ABOUT GETTING AN AUTISM DIAGNOSIS AS AN ADULT – written by Ruthie as a post for her blog – The Rolling Twenties
I thought that this week, I would try and raise some awareness of autism in adults. It seems that it is a topic that is never covered. We all hear about autistic children, but it seems like autistic adults are almost a taboo subject. Autistic people can lead normal(ish) lives and have fulfilling relationships, like Gareth. Well our relationship is kind of normal but in its own mad manner!
So let’s dive into the depths of Gareth’s brain…. if he has one… which he insists he has, but I am not entirely sure, given that he has put his t-shirt on back to front.
Gareth is currently rocking back and forth. He is completely oblivious that he is doing it, so I also rock, and ask “why are we rocking?” He stops, confused, “I didn’t realise I was doing it, I was just laughing at something.” When Gareth gets overstimulated by anything, including watching a funny video, or reading something funny, he rocks, or flaps. He also rocks when he is having a negative experience, so I have to be Sherlock Holmes, and figure out why he is rocking…it would help if he told me…but that requires a level of self awareness which he sometimes does not possess.
Gareth and I looking goofy!
Let’s ask Gareth some questions. This could fun. Please be aware, Gareth is brutally honest, and has no filter.
Why did you agree to do this interview?
The dog starts barking, so I think she is answering for him!
Gareth: Adults with autism don’t exist apparently. Everyone thinks autistic children grow up and magically disappear or get better.
Me: They get better with fairy dust?
Gareth: Yes, must be! I blame vaccinations (this is Gareth’s sense of humour coming through, with a healthy dose of sarcasm. Anyone who knows him will know that if he can fit a dig in at the anti-vax crowd, he will!) I wanted to do this piece to show people that autistic adults exist, and while we face challenges we can also be part of society.
When did you first notice you were “different” from others?
Gareth: One of my earliest memories, well, there were two that stood out, involved balloons and brass bands. The first one must have been when I was three or four and my Mum was playing volleyball with a balloon and I was absolutely petrified of it popping and making me jump…which it did! (and people say that it’s an irrational fear…) This is a phobia I still have to this day, which makes going to McDonalds interesting.
Me: I saw you glaring at the Balloon tree in McDonalds yesterday. I could see you were tense.
Gareth: There were children. Children and balloons do not mix! They should have age 18 rating. I wanted chicken nuggets so it was a dilemma.
Me: It’s all about the chicken nuggets with you.
Gareth: And McFlurry’s! Anyway the second memory would be about when I was six, and we were at a church event where a brass band was playing, and I was knelt down in the seats with my fingers in my ears because the band was too loud. I was getting told off by my Mum for being rude, but I couldn’t cope with the noise. In retrospect this was where I first noticed sensory issues, but I didn’t recognise it for what it was. I was also very difficult with food, and still am to this day.
Me: Yeah I can’t have my mashed potato in front of you! (laughter)
Gareth: Its vile, smells horrible and should not exist. How you can eat it is beyond me!
Why do you think you were not diagnosed at a younger age? And do you wish you had been?
Gareth: It was a different time and Autism diagnosis were only really given to people with intellectual impairments. As I functioned relatively well in a very structured environment in education my differences were put down to being a child. As I didn’t have any behavioral issues beyond a bad temper and a tendency to react violently, there was no intervention beyond de-escalating the situation. I was always a little eccentric, but it was never suggested there was anything different. In all honesty now, I am glad I was NOT diagnosed as a child, as there was no support in place anyway and I feel that the label would not have benefited me. I would have probably used it as an excuse to be lazy in education and would not have been forced to develop the coping strategies I have to use in adult life. Like completely ignoring people that are annoying me.
Me: Like me!
Gareth: Only when you are eating mashed potato or fish…or watching Jeremy Kyle when I am trying to sleep.
Me: Leave my guilty pleasure of Jeremy Kyle alone!
Gareth: Did you not want your lovely readers to know about your terrible taste in TV. Anyway moving on…before I get in any trouble. Or any more trouble than I normally manage to land myself in at least…
At this point I am speechless!
How did you find developing friendships as a child and how has this affected forming adult relationships?
Gareth: As a child I was fairly lucky as in a lot of my social interaction was structured through church, and there was people I was expected to be friends with. Given that children have no social filters anyway this wasn’t much of an issue. School was a little different, but again I was lucky in the fact that there were always other “odd” kids that I was drawn to. This led to some fulfilling relationships based on logic and behaviour as supposed to just being lumped together. It gave me an appreciation of people for who they are, and not what they are. A lot of friendships are shallow, whereas I found qualities I appreciated in my friends. Once I left a structured environment, however, I struggled with social interaction big time and found it hard to form bonds with people. I had acquaintances and a few friends but was always on the edge of any social group. Never feeling fully involved. This was a point in my life where I developed some very unhealthy coping strategies. Under the assumption that the more intoxicated I was the more sociable I would be.
Me: I always find drunk people weird and hard to talk to. I would have probably done a runner from you, if you were drunk!
Gareth: Yes but you were sober most of the time. Anyways I didn’t say it was logical! But alcohol and various recreational drugs are pretty good at making you forget your social problems. At the time I didn’t realise the damage they caused. I was just desperate to fit in.
Me: I just want to hug you. Bless ya.
Gareth: It was in the past. I learned that whilst partying might be fun, it does nothing for the underlying issues. Fortunately things are far better now.
He is currently stroking Scarlett, as she saw me give him a hug and jumped into his lap.
Did you struggle with Employment? If so how?
Gareth: My biggest struggle with employment was the social aspect. It’s very hard to keep a job when you are socially inept. I would always annoy people by saying the wrong things or coming off as condescending or patronising, which was never my intention, and I never realised I was like that until someone told me. Also the sensory aspect of the workplace was never ideal. Meaning I got tired very quickly, and my performance and productivity suffered greatly. These factors meant I was never able to maintain a job for more than a couple of years or get any job outside the service sector as I struggled with interviews and competing for jobs.
Me: I used to see you in all the shops I went in, and I always chatted to you.
Me: Don’t work in the shops I shop in then!
How have you adapted since your diagnosis, and do you feel your life has improved?
Gareth: Knowledge is power.
Me: You don’t have any knowledge. Sorry… (I am sticking my tongue out)
Gareth: See, dear readers, see what I have to put up with. Trying to be philosophical and I keep getting interrupted. Anyway I was saying knowledge is power, and knowing that there is a reason for my differences means I can take a logical approach to the challenges I face, and work on lessening the impact of them as opposed to trying to power through situations that I struggle with. Instead of thinking of myself as weird, I look at situations objectively and do what is best for me in these situations. I do not let myself be defined by what society expects now, as that puts too much pressure on me and ends up making the situation worse, so I adapt to my condition and take a slightly more selfish approach to life.
Me: I know what is best for you, you can make us a cuppa after this chat!
Gareth: It’s your turn! But I suppose… So anyway, I now actively manage my life. If a situation is causing me difficulty I will withdraw from the situation and approach it in a different manner. I will also analyse situations and work out if there is anything I can do to make it easier. Whilst seeming self centred, this approach has also allowed me to be better to the people around me, as I now think more about the impact the actions of myself and others will have on people. It also helps that I now have a good support network in place with you and the dog. Having someone around who understands people helps, as I can ask you what is going on when people are behaving irrationally (in my mind) instead of asking them or getting annoyed at them and upsetting them. Another thing I have discovered to be helpful is playing with stim-toys, like this fidget spinner which I absolutely love. I find it helps me concentrate on tasks better and gives me an alternative to displaying ‘socially unacceptable’ behaviours.
Me: I am glad I came before the dog then!
Gareth: I wasn’t necessarily speaking in order…
Me: You can definitely make the cuppas.
What challenges do you face now?
Gareth: My biggest problems these days relate to my executive functioning abilities (like impulse control, task management and concentration, and prioritisation) , sensory overload and mental and physical self care. These can be physically and mentally exhausting, but at least I now know the cause and can work on improving my life, instead of letting it continuing down a path of destruction.
Me: Path of destruction sounds like a heavy metal song, or screamo song.
Gareth: Nope, it was the prognosis of my life, now it is just what happens when I take you out in your wheelchair! In all fairness, that is still less destructive than the time you tried to drive a mobility scooter, Pets at Home probably still hasn’t cleared up the mess! I have learned to manage the difficulties life throws at me in bite-sized chunks, and to actually deal with the issues instead of sweeping them under the rug until the rug turns into a rather furry coffee table. Dealing with issues is certainly harder than sweeping, but for the first time in a long time, I feel like I am making progress in my personal development.
Me: Thank you Gareth for letting me pick the rest of the little brain matter you have left. It was very interesting to hear your thoughts. Life isn’t a bed of roses, but you have to make the best out of what you are given.
Gareth: Exactly, when life gives you lemons, make lemon meringue pie!
You can subscribe to more of Ruth’s posts via her blog – http://www.therollingtwenties.com/
This feature will also be published on EmbraceASD – A support and research blog by and for people with Autism Spectrum Disorder ran by Dr. Natalie Engelbrecht and Martin Silvertant (B.Des)
If you need help looking for services for an individual with an autism spectrum condition, we can help. Click below for the Autism Placement Support Service.