I often get asked what the process is to be diagnosed autistic as an Adult.
So the process is very long. I think current waiting times for an autism diagnosis through the NHS pathway can be as long as 3 years.
I was diagnosed in August 2019 but referred in March 2018.
I really struggled to get a doctor to believe I might be autistic. I was told I had depression from grief and needed talking therapy. Even in my early 20s my brother send me some information on Misophonia and the doctor had never heard of it so could not help me.
I was always told my issues were down to my hormones and with a better diet, exercise and time they would improve. (I was a county runner and national swimmer)
It wasn't until my late 20s when a colleague sent an autism quiz and I scored high that I had even considered I might be autistic. However, the more I looked into it properly the more I realised that actually there were many characteristics that did fit me. The main 2 being sensitivities to noise and also inability to connect properly with people and misunderstand social queues.
With the above knowledge I went along with the doctor and allowed them to book me for counselling.
When the team rang me to book me in for an appointment, I asked the lady how I would go about seeing someone for an autism assessment. I explained to the lady I think most of my problems stem from being undiagnosed with autism. The lady who I spoke to said she would look into it and come back to me so I trusted she would and she did.
She asked me 10 questions and I scored 7 out of 10 which meant I went through to the referral stage as you needed at least 6. The lady also booked me in for talking therapy (which, didn’t help). I remember getting the forms I needed to fill out fairly quickly and there was a time period given to when you needed to fill them out by.
The forms were very extensive in the respect the information required on them was from when you were a baby and it was about milestones. Therefore I had to ask my parents what these were. The forms also asked about employment, school, grades achieved and struggles you faced.
Once I filled these out and sent them off it was 12 months before I got my appointment with the consultant.
You have to take an adult or person who knows you very well. You are then split off and go into separate rooms. Both of you will be asked the same questions. There are 2 people you have to speak to each person speaks to both of you but separately. I took my mum to my appointment. My mum got asked slightly different questions about what her pregnancy with me was like and if there were any complications. Also asked more about what I was like as a baby and small child.
I on the other hand was asked things like how I found school, and employment. I was also asked what I struggled with and if I had life long friends, so if I still kept in touch with people I went to school or University with which, I don’t. Apparently this is common for autistic people but not common for people who are not autistic.
The process took between 60 and 90 minutes. The two people interviewing both me and my mum then compared what we had both discussed.
They were then able to tell me if I was autistic or not. They advised based on the evidence and meeting me that I was indeed autistic. I instantly felt relieved. The lady could see the relief and asked if I was expecting the diagnosis. I told her I was hoping to be otherwise I was just weird and didn’t fit in.
At the time there was funding for a follow up appointment. I did have this in October approximately 3 months after being diagnosed, and I found this rather helpful. I spoke to the same consultant that diagnosed me and we had a brief chat about things I can be helped with. She suggested I speak to my current employer and ask for any adjustments I may need to help me at work like the noises and lighting. She advised they should also know what to do. She told me there were no specialist autism counselors in my area. This appointment was the only one I have had about my diagnosis since being diagnosed.
What you realise quite quickly after being diagnosed is there is no help for you to navigate the support you need.
What I did was stop telling people about my diagnosis initially because I was being told;
“Everyone's a little bit autistic though”
“You don’t look autistic”
“You can’t be autistic”
The above comments all made me doubt my recent diagnosis. I now realise these were ableist comments. They made me feel like my struggles were not that bad and that I was just over reacting. This was how I was made to feel my whole life prior to diagnosis and now with a diagnosis it was the same.
I gained support through experience and also creating an Instagram account and started following other autistic people. I eventually did also have 3 years of private counselling to help undo most of the childhood trauma I had suffered but the work is still ongoing personally for me. I learnt enough techniques in the past 3 years of counselling as well as openly communicating with my friends and now husband that I am accepting fully of myself.
I do still mask I have no choice but to but my counselor validated me and gave me strength to advocate for myself better.
It really is not easy when you have bills to pay and need a job but at the end of the day employers do have a duty of care and if you are doing your job and need support and have a disability it is not just a requirement but also a law under the discrimination act of 2010.
So to summarise there are 3 processes
Initial referral
Form filling
Interview with someone who has known you for most of your life or who knows you really well.