Autism and Tourette’s – Unique, United & Unheard

January 11, 2021 - Adjust

Here at Adjust we focus on 4 neurotypes including Autism, Dyslexia, Dyspraxia and ADHD. However it is important to remember that there are significant overlaps with other neurotypes such as Tourette’s. In this blog we explore the overlap between Autism and Tourette’s, whilst also examining the barriers woman and girls face in accessing diagnosis.

We talked to Beth Greenwood about her experiences of accessing a dual diagnosis of Autism and Tourette’s and how it can be harder for woman and girls to access a diagnoses.

What led to and how did you get your diagnosis of Autism and Tourette’s. As a woman, did you feel there were any barriers to getting either of these diagnoses?

My mum always knew I was different but did not know how, despite this she was always fighting for this ‘difference’ to be recognised; unknowingly she had been fighting for an autism diagnosis for 15 years. I was referred for diagnosis at 15 and diagnosed as autistic when I was 16 following a breakdown. I believe this is because professionals are so male centred, they can only identify autistic females if they are in crisis, as this is when traits such as meltdowns and sensory overload become more common and masking fades into the background. The fact I was 16 may also be significant as this is when female relationships get more complex and it becomes more difficult to mask as it is harder to replicate what others are doing. I believe if more research is focussed on women with autism, there will no longer be a diagnostic split and fewer females will get to the point of crisis.

“I believe this is because professionals are so male centred, they can only identify autistic females if they are in crisis”

There is also a diagnostic split in Tourette Syndrome, although officially researchers say fewer females have Tourette’s than males, I believe females are better at hiding their tics and are underdiagnosed as it is a ‘male condition’ so they get diagnosed with a different tic related condition or they don’t get diagnosed at all. I found when trying to get my diagnosis, my neurologist was convinced I did not have Tourette Syndrome as my movements were too complex (which makes no sense as tics can be very complex and use many muscle groups) and I believe, although he never said this, he also did not believe I could have Tourette’s as the odds of a female having Tourette’s is very slim compared to a male. Males are 3 to 4 times more likely to have Tourette Syndrome with 1 in 100 children having Tourette’s so using that logic female children with Tourette Syndrome are 1 in 300 or even 1 in 400.

“I believe if more research is focussed on women with Autism, there will no longer be a diagnostic split and fewer females will get to the point of crisis”

How did you feel things changed once you were diagnosed with Tourette’s and Autism?

Things changed when I was diagnosed as autistic as I finally understood myself – something I had never experienced before. I finally knew why I didn’t like loud noises and itchy materials, I knew why I had experienced meltdowns and shutdowns, and most importantly I knew I wasn’t alone in this. This was a relief and surrounding myself with people with the same condition through Calderdale NAS Groups and more recently The Society 4 Neurodiversity helped greatly for my confidence and self-esteem.

The changes I experienced before Tourette’s diagnosis were bigger than the ones after. I knew I had Tourette Syndrome way before I was diagnosed, more so than Autism, and I already knew I was different through my Autism, so the changes were smaller. There was finally a reason for that cough, sneeze and sniffle I had most of my childhood and there was a reason for all these movements and vocalizations I couldn’t control. Once I was diagnosed with Tourette Syndrome, I became more confident in telling people what caused my tics and even what a tic was. I slowly became an advocate for Tourette Syndrome and even set up Halifax Tourette Group.

“Things changed when I was diagnosed as autistic as I finally understood myself – something I had never experienced before”

Do you think employers have enough awareness of Tourette’s and what could they do to address this?

I think employers, along with the general population, do not have enough information about what Tourette’s is and how to integrate people with Tourette Syndrome into the workplace. In my research I found 6 in 20 employers would not hire someone with Tourette Syndrome – a shocking statistic. I believe if employers educated themselves on Tourette Syndrome, they would find it is an advantage rather than a disadvantage. Research in 2016 found that children with Tourette Syndrome are better at processing some aspects of language which could be applied to learning languages or learning career specific jargon. An older study has found children with Tourette’s had strengths in logical thinking.

“I think employers, along with the general population, do not have enough information about what Tourette’s is and how to integrate people with Tourette Syndrome into the workplace”

Employers could focus on the strengths that people with Tourette’s bring rather than their weaknesses and make a few adjustments in work such as allowing a calm space for tic breaks and doing things differently. Perhaps saying and writing instructions on bad tic days, so no information is missed due to the tics being too distracting to the individual. There are admittedly things that people with Tourette Syndrome may struggle with, but each person is an individual so learning about the individual and thinking about the individual rather than the condition when recruiting would be beneficial for employers. With the right support and understanding I have no doubts individuals with Tourette Syndrome will flourish in the workplace and be an asset to the company.

“With the right support and understanding I have no doubts individuals with Tourette Syndrome will flourish in the workplace and be an asset to the company”

We would like to thank Beth for sharing her personal story and hope that you have found it insightful. Beth has asked if you enjoyed reading this blog to please sign this petition which aims to achieve NICE guidelines recommending more specialist Tourette’s Centres throughout the UK. You can learn more about Tourette’s by visiting Tourette’s UK website.

If you would like to start the Neurodiversity conversation in your workplace and discuss how to celebrate strengths and make adjustments for your neurodivergent employees, contact us.