John: Journey and experience with autism

When were you diagnosed as autistic?

I was diagnosed Autistic when I was 37 years old and I think it was late 2019 (around October-December).

What is it like being autistic for you?

Being Autistic, I’ve really struggled with a lot throughout my life and obviously didn’t know that was the reason for it. I’ve always been sensitive to loud noise, certain smells, socialising, certain movements from others (like fingers moving) etc. I’ve also always struggled with certain subjects, such as Mathematics. I’ve been in and out of jobs throughout my adult life, most of which fell apart in extreme conditions. I’ve had a lot of meltdowns over the years too, especially at home. This has made my relationships with family very strained at times, particularly with my Dad. I have a niece and nephew, who I’ve tried to help raise through the years, but have unfortunately had to keep my distance a lot due to not being able to handle the noise.

What has your experience been with Assert, as a service user?

My experience with Assert has largely been positive, even though I haven’t been with them for long. I’ve enjoyed doing one of the courses about Autism and also take part in the Walking Groups, although obviously they’ve been largely put on hold due to COVID. I haven’t taken part in other services or activities really, as they’ve normally either been in the evening or online through Zoom (neither of which I’ve been comfortable doing). I did briefly have regular appointments with Jenna about help with getting back into work, but then obviously COVID happened and so any type of work went out the window. 

How have relationships nurtured in Assert helped you as a person?

The staff I’ve interacted with have been amazing and so friendly, especially Julia! Coming out of both really bad work experiences and also depression and anxiety, it really made a difference to have nice, compassionate, caring people to talk to. On the walks we’ve done, it’s really helped make them enjoyable, as well as helped pass the time, that I’ve been able to talk at length about either my past experiences or any other topic, as they always make me feel like they want to hear it and aren’t either getting bored or just trying to get information out of me to use against me (as I’ve had done to me many times!).

Which activities do you enjoy the most to spend your time?

I used to enjoy cycling a lot, especially as I used to cycle to and from work every day. However, since COVID, I’ve gotten into working-out at home. This has really helped me lose weight, get fit and also helped boost my self-esteem or body-confidence (both of which have always been really low due to bullying throughout school and obesity). I’ve also built-up a daily routine incorporating the work-outs, watching various TV shows or movies and playing video games.

How have you been caring for yourself during the lockdown? Do you have any tips for other clients?

I do get out with my parents twice a week to do essential shopping and have small walks, which are enjoyable and relaxing. But, honestly, I’m really happy and comfortable with the routine I’ve built at home. I know a lot of people have struggled with the lockdown, but I’ve been loving it and been a lot happier not having to deal with work, appointments and other stresses which just fed into my depression and anxiety in previous years. If anything, I’m more anxious about lockdown ending! Additionally, because I’m on Universal Credit and have been getting more money than before, it’s taken away all the financial stress and struggles I had each month to pay bills and pay out for day-to-day stuff like bus fare and going out for coffee. As I’m very active on social media, I’ve been doing a lot to help others, particular teens, who have been struggling through lockdown and suffered from stuff I’ve been through in the past like depression, anxiety and suicide. Among different things, I usually give advice like to have a daily routine like myself they can do every day. You don’t have to do exactly the same stuff every day, you could alternate certain things. For example, I don’t do exactly the same exercises in my workouts every day, I do different ones for different parts of the body each day, but also take a break on days I go out.

If you would like to eliminate one myth around Autism, what would that be?

I don’t know if you’ve been following the controversy surrounding the musician Sia, who’s recently released a movie called “Music”. The entire Autistic community has been up in arms about it as the central character is meant to be Autistic but is depicted and treated really stereotypically. I think there’s still a lot of prejudice towards those of us on the spectrum, that we all behave a certain way, that we all have extreme body movements/stimming and sometimes need restraining when we “go crazy”. It puts out the wrong message to neurotypicals, when every single one of us is different in so many ways and need treating differently. I personally am so different to other Autistic people I’ve met, of different ages.