Published on 12, July, 2020
Hi everyone!
I got my diagnosis a few weeks ago, and while it wasn't unexpected I am now struggling to come to terms with the 'label'.
I've been told I probably had autism since I was like 17/18, and it's taken years to finally get the assessment. During that time, I sort of disregarded possibly being autistic and tried to continue my usual life. When I got my diagnosis, everyone kept telling me that 'nothing will change' and 'I'm the same person I always have been'. However any relief I felt when I first got the diagnosis has now turned into loneliness and helplessness.
I am just hoping someone can provide some insight into their own experience with handling their diagnosis and hopefully tell me that I won't always feel this lonely and hopeless.
Thank you very much everyone! ️
Knowledge is better than ignorance, always. Knowing that you are autistic is useful. It means that what probably felt like a meaningless jumble of odd traits, problems and limitations, all totally specific to you, are not, they have an underlying cause. You are not a defective neurotypical, you are an autistic, trying to function in a society designed for the comfort of others, but which is profoundly uncomfortable to you. Certainly, you are not on your own, you have found this forum, which is full of people whose experience of life will have huge areas of overlap with your own. If anything you are less alone than you were before your diagnosis, there are all of us autists available.
I think your progress post diagnosis has a lot to do with how others see you, how people support you, and whether you get accomodations you need in your life
You will find that many of us who were late diagnosed report losing friendships after diagnosis. If you are employed there is no guarantee your employer will take your diagnosis seriously and there is no guarantee they will support you if you need help. If you need benefits to live on there is no guarantee you can convince the DWP of your needs.
Personally I have found everything changed post diagnosis. But that may be because I had reached a point in my life where I could not function anymore. I have been asking for assessment for 25 years by the time I was assessed at 45. I was well and truly broken by the system before I was assessed.
People you have known or your life may decide that they don't like the autism diagnosis and don't believe it. I have no time for people like that so whether they left me or I left them I wouldn't like to say.
Because I have been told so often that I could not possibly be autistic I was also in denial and as a result had no understanding at all of my own body and brain. I have spent most of the last 25 years just forcing myself through and not listening to a thing my body and mind told me.
It wasn't until after diagnosis that I realized just how effected I am by sensory overwhelm, I had always put my difficulties with being out in the world down to anxiety and depression because that's what the doctors kept saying. It was never anxiety and depression, now I am aware of what's going on I can feel that it is the sensation of wind on my skin or lights in my eyes or how tight or loose my clothes are the list is endless. There's also explains why no antidepressants ever worked. I have lived in a permanently overwhelmed state for most of my life and been unaware of it.
I am categorically not the same person who was diagnosed 18 months ago. I have a far better understanding of my existence now. 18 months ago I was on yet another long-term sick from work, a regular thing that happened every two to three years for around six months at time from age 20. I spent my entire working life hiding in toilets to cover meltdowns, working longer hours than everyone else just to get my job done and falling asleep on the floor at home as soon as I walk through the door because I was so tired from working. The DWP finally agree that I need support in the form of benefits. Sometimes you need that assessment letter just to make others believe you.
My advice would be read and learn about what autism really means. It's far more nuanced than it seems initially. Yes it can be lonely especially if you hang around neurotypicals, but if you find like-minded autistics /ND folk the world can open up in a good way. Just remember that everyone is on a different journey with their autism diagnosis, everyone's understanding of autism is slightly different because they have a different lived experience. And remember those who haven't read up a lot on autism may still be operating on out of date ideas about the condition.
I've gone on a lot so shutting up now!
If they were being honest you have been autistic since birth. Autism is not something you have (as if you could catch it or aquire it, which you can't) it's something you are from day one, it's only at different stages of social development that it becomes outwardly noticeable.
NAS90140 said: 'nothing will change' and 'I'm the same person I always have been'
That's actually true. What can change, and seems to have, is the way you feel about yourself. But you need not let it set you apart or make you feel less than anyone else.I was assessed as a kid so I've had a long time to grow comfy in my own skin, it doesn't matter if non-autistic people are ignorant and only see defecits, their underestimating us is their error not ours, I know I'm different not less, we autists have our own culture https://autismuk.com/the-culture-of-autism/ and community, and our own celebrites https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/29512/famous-autistic-people---lionel-messi/ . I'm proud to be autistic.