Autism in an age of TikTok self diagnosis

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With waiting times for autism screenings constantly on the increase, are TikTok trends that fixate on self diagnosis really that helpful? Messy explores…

‘Bit of the tism’

‘I’m really triggered by stuff like that’

‘I’m feeling overstimulated right now.’

Sound familiar?

In 2021,#autism was the third most used hashtag on TikTok, and ever since lockdown, there seems to be a fixation with the neurodevelopmental disability.

But, in an age of increasing misinformation, how accurate is the often self-diagnosing content we see?

Eileen Shaklee is a blogger who has shared her and her autistic sons’ life online, over twelve years, for her 100,000 Facebook followers. Her son is now 19.

The 49 year old went years without her own autism and ADHD diagnosis.

‘’I think any self diagnosis is accurate BUT it’s what you do after that with it that is the bigger question”, she says.

Eileen appreciates self diagnosis and the support platforms like TikTok can offer, but questions how helpful it is long term.

”As humans we self diagnose ourselves all the time with all sorts of things. Your nose is stuffy, you self diagnose yourself with a cold coming on. It’s important to get that official diagnoses, to confirm it and to help set you on a path on how you are going to treat it going forward”, she says.

Times have changed for Eileen, who notes that coming out of college in 1996, most people didn’t know anything about autism.

Eileen added that social media plays a role in providing a hub of diversity, which is often lacking in the mainstream.

”It’s really important to follow up with a doctor. I know it’s a privilege and not everyone can. Even with insurance it can be very expensive. Wait times to even get the screen are very long, but it’s been extremely worth it’’, she says.

Lauren Rose shares her experience of being autistic and living with a chronic illness on Instagram. She feels that although representation is good, it can often be offensive and completely inaccurate.

‘‘I did a post on how the use of the word ‘acoustic’ makes me feel, as this is a big one I’m seeing a lot at the moment and it really frustrates me. I think I’m happy for people to talk about the experiences of autistic people but only if they are well informed and meaning well by it”, she says.

‘’Anything that is made as a joke or even remotely ableist is for sure not ok… but some people might be friends , family or carers genuinely trying to make a difference which can’t be all bad.’’

Lauren thinks that the representation on TikTok is also an issue, as it leans towards white, late diagnosed autistic people who don’t need so much support in their day to day lives compared to others with higher, daily care support needs.

‘’There’s literally no support. Where I live there’s nothing for adults at all so finding an online community can be really beneficial”, she said.

Explain : what actually is autism?

Autism is a lifelong developmental disability which affects how people communicate and interact with the world.

It is a spectrum condition so affects people in different ways, including having social and interaction communication difficulties.

National Autistic Society UK says that there are more than 700,000 autistic people in the UK, which is more than 1 in 100.

TV presenter Chris Packham is the ambassador for National Autistic Society, and described his experience:

”The greatest discomfort for autistic people can be the social one. For me, I was confused by the way people behaved”, he said.

For more details, see : National Autistic Society (autism.org.uk)

Hear from an expert:

New statistics from the NHS suggest the wait time for autism diagnosis is increasing, hitting up to 300 days for some people in 2023, meaning many end at self diagnosis.

Dr Jessica Myzak is a Psychologist specialising in autism diagnosis. Starting her TikTok account in 2020, she now has over 65,000 followers. She decided to start creating educational content for people who might be considering that they could be autistic.

Dr Jessica Myzak said : ”My experience with the people I have seen is that most people who have done the research, who have really looked at themself and are self diagnosed are very often correct. They know themself.’’

‘‘For an adult who really resonates with autism, has done some of those online tests and read a lot, I’m all for that. I often tell people, hey if you’re on a waitlist, aren’t in a position to to get an evaluation or just don’t want to I understand. But if self diagnosis helps you to better understand yourself, identify some tools and ways to help, then how could that be a bad thing?’’, she says.

‘’Difficulties with self diagnosis is in terms of getting that extra support, advocating for yourself with employers or with schools or even I think with family members and friends it doesn’t go as far.

The other concern is that sometimes there’s’ more to it, so autism might be there with OCD or PTSD , you know with something else that can be really important to know. Then it can be really helpful to have recommendations and referrals, she says.”