Autism | Late Diagnosis | Support | ADHD | PIP

Receiving an Autism Diagnosis When You Are Older

It explains a lot, but is it always life-changing?

Decades Without Knowing

I lived for 45 years without knowing anything about autism and ADHD.

I went to school, college, and work.

I got a job, got married, and had children.

I always felt different, but I didn’t know why.

I tried to fit in as best I could.

In some cases, I copied what others were doing. I had no idea that by trying to blend in and hide my true self, I was doing something known as masking.

However, for much of the time, I kept a low profile and avoided people.

The Benefits of Diagnosis

I was officially diagnosed with an Autism Spectrum Condition when I was 48 years old in 2017.

Finding out about autism (and later ADHD) explained so much. Finally, I understood why I’d felt different all my life.

While it’s been great to understand myself better, in my particular case, it hasn’t really had a massive impact on my daily life in any practical way.

Perhaps if I’d found out when I was a little younger, or while I was still working, it would have had a greater impact.

Since my diagnosis, my main source of support has been interacting with the neurodivergent community on Twitter. When doing that, my official diagnosis has helped me feel like less of an imposter.

Still Masking

I’m still finding it nearly impossible to stop masking. After decades of putting on an act, many of the people in my life only know the version of me who wears the mask.

My true self is more child-like.

In private, I sometimes like to stim by ‘drumming’ with my fingers on my chest, or my legs.

With my children, I’m often quite zany; I was also like that with my late wife.

I go through phases where I might say or sing random lines from TV shows, my own made-up words, or phrases that other people have said over the years.

Sadly, if I try to drop my mask even slightly in front of other people, they tend to give me strange looks and wonder what I’m doing. It’s understandable, but it means I quickly revert back to acting like the adult they’ve come to expect.

Reasonable Adjustments At Work

If I was still employed, my diagnosis might have been more useful in practical terms. I would have the right to ask for ‘reasonable adjustments’, which would hopefully reduce my levels of stress and anxiety.

However, there is still a long way to go with autism awareness, so I’m not sure how easy it would be to argue the case for such adjustments. I imagine I’d feel quite anxious about asking.

My ideal/fantasy list of adjustments might include:

My own office
Few phone calls
Work from home as much as possible
Flexible hours; preferably fewer hours than full-time
Private toilet
No need to travel to other sites

Disability Benefits

Some autistic people receive a benefit called PIP (Personal Independence Payment) here in the UK. However, I’ve not tried applying for it, because I don’t think I would be eligible.

People like me seem to fall through the cracks in the system.

I’m so good at masking my anxiety, that I don’t appear to need any support — not that anyone is checking. Also, the fact that I worked full-time in the past makes it seem like I should be capable of resuming work without any problems.

Despite feeling burned out, I’m expected to carry on regardless.

Final Thoughts

In my local area at least, there seems little support for autistic adults after the end of the assessment process. So if you’re expecting someone to rush into your life and make everything wonderful, then you are likely to be disappointed.

Despite that, I’m glad I found out I’m autistic.

If you are considering seeking an assessment for any neurodivergent condition, I still think it is worth doing.

What you do with the information afterwards, and how much help you receive, is another matter.

Perhaps one day there will be more support.