Being disabled is hard. Living with a disability can only be manageable with the correct support. Obtaining support can often be harder and more exhausting than the disability itself. Finding suitable employment is sometimes nearly impossible especially when most companies' on boarding processes create an invisible barrier making most jobs inaccessible to a lot of disabled people. Once you do manage to secure employment, deciding to disclose your disability is yet another thing you need to consider carefully. Disclosing a disability for reasonable adjustments in a job is not something you do lightly. Some employers will accommodate you based on what they think you need, others accommodate you but then you have to continually remind them of the accommodation, others will manage you out of the job and not accommodate you and you will get the good ones who don’t make a fuss, have a great culture and accommodating you is straight forward.
How do I know all of the above? My name is Lucy Megan. I am a 35 year old female who was diagnosed autistic aged 31. I know what you are thinking about another story about autism. Boo Hoo, change the record. However, please hear me out.
I left school with 11 GCSEs A* to C. I left Sixth Form with 3, A Levels grade B. I left the University of Liverpool with a 2:1 Bachelor of Science Honours degree in Geography. I thrived in education and had big hopes for myself and my future. I wanted to climb the corporate ladder and work in an office. I am not work shy, I love to work. No job is beneath me. I will do any job from cleaning to being a supervisor. However, when I entered work I really struggled with the office environment. I was very good at the job but absolutely terrible at navigating office politics. I had sensory issues with people eating and typing on the keyboard. It was a nightmare but I got by, by listening to music through headphones and lots of bathroom breaks or distracting others by talking. They would stop working and I would work whilst they were chatting. It worked for a while until your manager pulls you for listening to music or being disruptive.
I finally sought diagnosis after a colleague sent around an online quiz to the team and I scored highly. I managed to get in the system. This was in February 2017. I was not diagnosed for another 18 months, August 2018 and it is a lot longer now.
Being diagnosed autistic saved my life. It gave me a reason for why I felt I did not fit in anywhere I went, or why no matter how hard I tried to change myself I could not maintain relationships I wanted with people as friends.
Once I received my diagnosis I felt relieved. I felt now I would be understood. I would get the support I need and finally be able to progress in my career. I thought very naively that once you got diagnosed with a disability employers would have a list of what they could help with or be able to help and support you so you find work easier. I thought my “friends” would finally understand why I can be so abrupt or some magical gateway would be opened to a world of support and help. The reality couldn’t be further from the truth.
When you get diagnosed, you are told on the day and given pamphlets and that's it. There is no ongoing support. If you expect doctors to know much about being autistic, think again they don’t and half the appointment is spent explaining how autism affects you rather than getting support you are there for. There is no specialist autism counselor in my area on the NHS so I had to pay for a private counselor which was £50 an hour. You are also not told about the support you can get. I have a sensory room and expensive noise cancelling headphones. There is no discount offered on these if you have a disability. I can only wear certain brands of clothing due to where labels are and materials used. I do work full time but it impacts my mental health massively. Finding a more suitable job is near impossible despite my skill set and employment experience.
When you have a disability you are entitled to support such as PIP (personal independence payment) which is not means tested so anyone with a disability can apply. You can also get help through access to work so if you need certain help, the government will help your employer with the costs and finally you can ask your employer for reasonable adjustments.
You may read that and think well, that's great you do get loads of support. It's really easy and you should be grateful.
It really isn't. Press often advertise PIP as “if you have one of these conditions you may be eligible for an additional x amount per week to help”. The application process for PIP is outdated, degrading and exhausting. I had to fill out paperwork, lay bare my condition, have a telephone interview with someone who knew nothing about Autism and my level of prior education and results I got 20 years ago whilst being cared for by my mother, meaning I was able to focus on my school; as did the fact I can mask and because I can communicate rather well I was deemed not autistic enough so was not awarded PIP. I then appealed this. Again that got dismissed so we went to court. The process took 18 months. So if I didn’t have a job that's 18 months of no additional financial support. Yes if you win it is all backdated, however if you have rent to pay or bills that back payment won’t help with how long it takes to get a court hearing. Luckily for me after explaining to the judge a medical professional and a disability advocate I was awarded PIP. It was hard though for the judge as he said he could see I struggle in life but it was hard to identify what points to award me.
Next option is to just get a job. However, as much as employers say they are diverse and don’t discriminate the way they employ people does discriminate. If you need to be accommodated for an interview you have to ask. This puts you at a disadvantage. It is like if you were pregnant and went for an interview, you likely wouldn’t tell the employer because there is unconscious bias at play. During COVID I was interviewed for a role. It went really well. I disclosed I was autistic in the interview and I got offered the job. I said I would need to have the option to work from home should I need to. They were working at home because of COVID however, they said it would not be possible. I therefore could not accept the job. It was perfect for my skillset, paid more and had better hours. I can work in an office but COVID made me realise I need a WFH option and now employers are pushing for a return to the office. It is making it harder to access other jobs. Asking employers for accommodations is also hit and miss. When you ask you have to, have meetings which are stressful and be quite open and honest about your disability. You find out pretty quickly most employers do not care about the individuals they employ, just their bottom line. Employers are years behind where they need to be.
Now Rishi Sunak is telling people to get back to work and stop being on long term sick. What Rishi Sunak needs to do is spend money on the NHS, provide disabled people with better support such as, support networks, counsellors and provide employers with better training to help support disabled people. It is easy to pick on a minority. It truly baffles me why HR Qualifications do not cover disability support. The Equality Act has not been updated since 2010. There are too many loopholes for a disabled person to be discriminated against and unfairly dismissed from a job. The onus is on the disabled person to prove they have been discriminated against, not the employer to prove they did not discriminate.
I would not change being autistic. I love my brain and how it works. I would definitely change how I am treated by society though. I would change the amount of support I can receive. I reach out to my local autism charity and there are no support groups for autistic individuals who do have jobs and are discriminated against but there are support groups for parents of autistic individuals.
I set up my company www.autisms-alright.co.uk as a platform of information for newly diagnosed individuals. It is also for companies to get in touch to receive training and help on how they can be more inclusive. This is alongside my current full time job.
Rishi Sunak has silently said we do not matter. He is falsely proclaiming we somehow have it too easy. I would love for Rishi Sunak to spend a day in my shoes. Stop picking on the minority and start looking at where the shortfall really lies in big corporations that get away with paying hardly any tax in comparison to the profits they announce every year. However, Rishi Sunak would never impose tax hikes on these because they pose more of a threat than the minority that is disabled people!
Sincerely
Lucy Megan
Director
Autisms Alright Ltd.
