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Grieving after Late Diagnosis...

Last month I was experiencing a severe autistic burnout that quite literally broke my brain and forced me to literally take time out of life, seek medical help and pay for additional counselling.

I have not chosen to discuss this before, not because I am ashamed but, because it took a seemingly minor thing to create a butterfly effect and major mental breakdown which forced me to re-evaluate everything in my life.

My burnout was as a result of people pleasing, putting others needs before my own and not respecting my own boundaries.

I was a super high achiever in High School as an undiagnosed autistic person and I realise now, this is because despite the bullying, High School provided me with the environment I needed to thrive. I had routine, things that interested me like sports clubs and band. I had a mum that organised my life and literally did everything for me to be able to succeed. I had teachers that made me write in my homework diary. I had a timetable. There was scheduled holidays and breaks. Notice was given to changes. The holidays were long and it meant you could 'survive' knowing you had a week, or two off in just a couple of months to recharge. You had certificates, expectations, rules, boundaries that were clear.

You are told do well in school and you will do well in life. You will succeed however, school for me was like 5 hours of work. Now I do 7 hours work a day and I have to manage and motivate myself. I thought I would get used to it. I was always mega busy in school but the things that take it out of me are the mundane things like washing, cleaning, laundry on top of going to work. ( I know everyone dislikes chores but I dont actually dislike them I am just too exhausted mentally to do them) If my husband didn't provide food for me I honestly would not eat or drink.

When you are diagnosed autistic late in life nobody talks about the continual grief you go through as you literally mourn the life you thought you were supposed to have.

You don't learn your limits straight away because prior to diagnosis you were always pushing your limits and wondering why things were not working. This pattern of behaviour does not go away just because you are diagnosed.

You end up on the same roundabout you were on that sought you to get diagnosed because something, was obviously wrong however, you are thrown with it (diagnosis) the misunderstandings of neurotypicals about autism and for myself personally because I struggle to communicate what I am thinking, this can quickly become overwhelming.

There is literally no support when you are diagnosed, NONE!

You have to teach yourself everything from employment law, advocating for yourself, setting boundaries with family members, friends and colleagues, asking for the right accommodations if you need them in all walks of life wether that be banking, your job, travel and filling out applications.

You are born into a world set up to literally fail you.

You have to overcome hurdles and obstacles every single day whether that is to find the energy to walk the dogs, tidy up, clean, speak to people, leave the house, get out of bed, phone the bank, etc...

To top that off you then have to try and pay bills with no support from anyone but yourself and most autistic people end up working in lower skilled jobs if they manage to get employed at all, because they are not given the same opportunities as neurotypical people due to their perceived difference or difficulty in building relationships with other colleagues.

My recent burnout was actually the worst and best thing that happened to me because it gave me perspective on my limits and allowed me to address my boundaries and finally find acceptance of myself.

Functioning labels are horrific because in neurotypical world I am not normal I do not fit in however, to get support of autistic charities I can't because I am seen by them as too normal. Trust me in burnout I looked for support groups for people like me who can 'function' in society and there were none. It is extremely isolating.

I accept there are things that come super easy to neurotypical people that are hard as hell for me. Everyday I leave my house it is an assault on my brain. I can't just leave the house. I have comfort aids, plans, 'escape routes'. I have to remind myself daily that I am my own person and I am competant.

However, I now accept that I can not change who I am and it is not fair for people to expect more of me when I already give too much of myself. So now I do not give more than I am able to on any given day. That is the promise I have made to myself and it is hard as hell but I feel better for it. I am in control of that yes, I still have to work to pay my bills but I have a husband that supports me I am lucky.

On the back of the reflection of my burnout I decided to do more of what I like and not what I think people expect me to be.

The things I enjoy most are:

  • Presenting

  • Writing

  • Sharing my Knowledge

  • Buying and selling things

  • Having control of my own destiny

So in 2024 I plan on doing more of the above by blogging more and also offering consultancy services to employers, charities and professionals in education.



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