Living with autism in London- BBC London

What's it like living with an invisible disability in London? In the UK one in 100 people are on the autism spectrum and there are around 700,000 autistic adults and children. (Source: National Autistic Society)

Barrington Campbell was diagnosed as autistic at 30 years old. Growing up he said he struggled making friends and felt isolated.

Five years later he's created Kagai Games, designed to provide tabletop games and events for people with social anxiety. He said: "I wanted to provide a space that was inclusive for everyone with social anxiety."

Video by Gem O'Reilly

[catherineorgz]

My boyfriend was diagnosed with Autism 2years ago and he just told me that recently, we are dating for half a year now..that explains why he doesn't talk much but he's starting to talk more. I'm watching this to learn and help him out so I can take care of him too.

[mrumarGTA]

As an autistic 29 year old. It is incredible lonely being autistic no friends no relationships. Social interactions is nighgmare for us Lot of society don't understand this.

[SunShine-tw]

I’m 67 and have just been diagnosed and I am so grateful as it explains an awful lot.

[KyloZach]

I'm an autistic young adult, but with a big imagination. The real world can be a bit scary for me and I just wanna succeed, and have full support from my family and friends. I wanna do whatever i can to help people out and have a safe, happy life. 😔

[adrianmargean]

I am autistic and I find it very difficult to love in London because it is complete chaos most of the time. Work can be difficult to find and very demanding for someone like me and life here requires a lot of flexibility and negotiating tough situations, which I am very bad at.

[indigenoustruthx]

I'm 32 and I think I may have mild autism. I was voted most shy in high school. Students use to talk about how shy and quiet I was right in front of me. I had some friends but it was so difficult for me and I have to try so hard to be normal in front of them. Social situations are terrible for me, and I can hardly ever make eye contact, even with people I know like my brothers it's difficult. I have a difficult time connecting to people and social cues and am very socially awkward. I also think I have a tic where I'm always blinking my eyes or opening them up wide. A lot of times I feel my facial expressions don't match my emotions. I get really bad social anxiety and tend to take things personal when I shouldn't. I hate when people give me their attention and when eyes are all on me. I find it's hard for me to establish long lasting relationships with people. I'm so weird and always feel like I can't relate to others. Like why am I like this?

[megantrotman]

It is really is interesting that you were able to take your passion for table top games and share it with others. I think that a huge positive to being autistic is taking the passion and in-depth knowledge you have for something and sharing it with others. Connecting with others is always difficult for someone on the spectrum but to create something and share it makes it so much worth while <3

- thanks for your interview :)

[JimmyJaxJellyStax]

As an adult with autism, body language is an incredibly technical science of obsession to compensate for why much of it doesn't "flow" so natural - so there is an overcompensating with masking because that's gotten positive feedback from people. I absolutely have to remind myself to make sure to not over-speak answers and to ask questions about the other person to technically execute friendly engagement that otherwise wouldn't come very natural throughout a conversation beyond the initial small talk and greetings. Eye contact is often merely forgotten with a lot of internal technical analysis of the situation so this also requires reminders based on familiar cues to trigger those reminders. I often get lost in the thinking more than the anxiety, too passionate on some subjects which can turn off those less interested. I think small talk just doesn't seem to provide the same "energy" and "ice-breaker" effect for many autistics compared to nuerotypicals. Sometimes I never make it past the ice even after 10+ mins of conversation with someone new, just not happening.

[Retrver]

I struggle with public transport in london, navigation is chaos for me and confuses me alongside the sensory aspect of it all, i've missed out on a lot of social opportunities.

[adolfohernandez]

Trying to get a diagnosis here in America feels daunting af.

[MrAndywills]

As a late diagnosed autistic. The main problems and stresses I encountered came from the neurotypical society.

[DeliciousFashion]

Does anybody know of any autistic groups in the UK for adults? It would be nice to meet or talk online with other autistic people.

[RedCrowJXU]

He loves board games. He is an awesome dude.

[WhoThisMonkey]

I simply cannot stand wearing headphones in public, yet I need something to drown everything out.

Blue tooth speaker, and everyone looking at me is my only real option. 😂

[vanjavanjusic]

But people with asperger are often so kind and polite. I would always prefer to have a neighbour or maybe also a friend who is open, honest and friendly, rather than some back stabing popular neurotypical person. At the end it is important who is good person to you.

[donnanewby]

I disagree with what you said sir. You said, "autism is not who you are, but an aspect of your personality that you incorporate into your everyday life.".

I feel this comment could be very damaging to many autistic people.

If it a part of my personality, I can change it, because personality can be changed, moulded, shaped.
HOWEVER, I am autistic which means my brain has developed differently to that of a non-autistic person's. I cannot change my brain.

Most people with autism have sensory, emotional and cognitive dysfunction, and this dysfunction makes life VERY difficult to life 'normally'. They can be severely affected, be isolated with little or no friends or support, housebound because of their dysregulation, experiencing great levels of illness and distress because of it.

How indeed would a person incorporate this into their lives?

I think the way that you express this isn't accurate and is very misleading.

I do not have a need to change my personality, I have a malfunctioning brain, body and emotional system. Autism overload affects the nervous system, causing the malfunctioning and illness, and meltdowns, shutdowns and burnout.

With autism the rate of suicide is higher than the general population, and the life expectancy I have read in one research paper says is ON AVERAGE 20 years less than an non-autistic person.

Autism is not anything to do with a personality trait - this is false information.

[TheSamtheman]

I have high functioning Asperger’s which is a mild learning disability. I find it very hard to get a job if I get a job I find it very hard to keep the job. But in the U.K. the support for people with mild learning disabilities is not really there. I got my income support taken away from me as I went to a benefits meeting and they said I do not qualify for any benefits due to the strict rules the government put in place. I see all these immigrants illegal or legal getting free accommodation and benefits but the U.K. are not willing to help me. I can’t work in a fast paced environment. I also have high anxiety and take medication. Now they took away my benefits I now have to pay for them. But can’t get a job. The support workers I have had just do not really understand as they not really qualified. So I packed my bags just 3 years ago and said goodbye to the U.K. I been back for 18 days in July. First time in U.K. for 3 years. I will never ever go back to live in the U.K. if the U.K. won’t help uk people who are struggling in the U.K. But will help immigrants then you should be very very ashamed as lots of people in the U.K. are struggling and do not get the right help. U.K. people can sometimes not be very tolerant of people that are quirky or a bit different to the norm. but unfortunately. It should be equal opportunities in the U.K. but it’s not. Uk is not a fair country to live in. It’s not right to give the uk tax payers money to immigrants instead of that money going to help U.K. citizens in need of help and support. There are some good things about the uk but there is not enough good things. Please uk be proud to be British and be proud to help out British people in need to help. Well done to all the Asperger’s people who have a great life in the uk and have a decent support worker and have a job or have the right beliefs.

[KlasKettilssonWullt]

I am autistic I liked London as usually I just never connect
Curiously I noticed that most of problems was that I did everything myself
instead of asking for help

[sophiadagia]

My son 3 and got diagnosed with autism on the 31st off October

[GinaGodfrey]

diagnosed a few months ago age 31 and this video made me tear up 😢
I'm trying to figure out who I am and how I can get back to work as I've been off sick