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37 years old, recently dignosed and figuring it out

gkimmelman

Hi everyone

I'm 37 years old living in London. Earlier this year I was diagnosed with ASD which came as a big surprise to me. I never thought I had Autism. I always knew I was different and believed it was something like ADHD. Compared to my friends I always had some bad "struggles" which have led to some bad results: I dropped out of school, I dropped out of university, and in recent years I've been leaving job positions after 1 year. I've known I've been "struggling" with my mental health, and there have been behavioural patterns I've identified in recent years, however I have always been made to believe I have to just "get on with it" and couldn't allow my mental health to get in the way

It was only this year when my line manager, who disclosed to me that he got diagnosed with ASD during his childhood, asked if I was Autistic. Fast forward a few weeks, I have my first appointment with a therapist, and within the first 30 minutes they pause and ask if I was (diagnosed) Autistic. At this point I knew something was up, and the therapist assisted with a fast track ASD assessment.

I'm lucky for having an Autistic manager, and a mental health professional who was able to identify it, otherwise I would continue my life unknowing and not getting the necessary support.  I am also lucky at the time of the assessment I had private healthcare through the company I worked for, and I only had to pay a small excess fee (compared to the whopping £3000+ charge)

After getting the diagnosis there were plans on getting some support, however I left my job and consequentially lost the private healthcare which covered all the costs.

Now I'm trying to get the support again, but through a combination of NHS referral and self educating with books.

The diagnosis has been hard to swallow and I'm slowly coming to terms with it. There's a feeling of frustration and sadness that If I had been diagnosed earlier in my life, then I would generally be doing better in life both personally and professionally.

Looking back I can identify many behaviours as Autistic (or caused by being Autistic) which have caused some real struggles in my life. I've struggled to hold down jobs, and my former partners have struggled with me in relationships.

I'm trying to keep positive, and I still don't know what I'm doing or how to go about it. Hopefully the NHS will be able to provide support, and I'm looking to participate in local support groups in London and meet and connect with other neurodivergents.

That's me.

So how about you?

Can you relate to my journey?

Regardless of whether you can or not: What has your journey been like? Have you got the support you needed? If not, what you been doing to get that support?

And for those in employment: has your employer (and line manager) been supporting you and, if so, how?

Parents

  • Hi gkimmelman, and welcome to the online community!

    There are some advice pages and resources here on the NAS site you might find useful having just been diagnosed. There is a section on the advice hub called 'After Diagnosis' - https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/after-diagnosis - which has some discussion on how you might feel post-diagnosis, support that is available, and disclosing your diagnosis to other people, including at work.

    There is also a section on getting support at work specifically - https://www.autism.org.uk/advice-and-guidance/topics/employment/support-at-work/autistic-adults - which covers some of your rights under the law and has links to further resources on autism in the workplace.

    And with regard to support groups, the Autism Services Directory can help find local organisations and services across the UK - https://www.autism.org.uk/autism-services-directory - and can be filtered for your postcode and the type of services you're interested in, so you could try putting in social groups in London for example.

    Hope this is of some help,

    Ross - mod

  • in reply to Deleted User

    I can relate to your situation having found out at age 44 after paying fir assessment.

    I'm reading some books (some annoying as they focus on the author's angle or one fella trying to wedge sexual orientation into ASD), tried NHS its just been a brick wall still they just signpost and I hit dead ends, lots of sign posting which turns out to be wasted effort, been trying private psychiatrist and just ended it since it was very much as I'd expect from a text book of turning the sentence back on yourself to find the answers and ultimately frustrating so far.

    Happily pay someone that can really help in a good will hunting way and not just go by the textbook for answers. So far not been a great change and not found coping mechanisms for situations which I think would really help.

    Waiting for access to work which has been around 6 months so far Smile it's just shocking there seems to be no recognised help.

    Annoyingly I have Bupa private med now who won't have anything to do with it. 

  • in reply to NAS93538

    I know I'm late responding, but I've just joined the forum. We're a similar age (I'm early forties) and just wanted to say your story resonates with me, dropping out of uni, struggling with jobs etc. I got an Asperger's diagnosis years ago but I've only recently come to terms with it. When I got it, there wasn't really any support out there, you were diagnosed and got on with your life. Did you manage to find any support groups? The only groups near me are for adults with learning disabilities. It's a shame there isn't more out there for us late diagnosed, probably high masking, adults. I would recommend watching Orion Kelly on YouTube though, he is great. His video about how to unmask as a late diagnosed adult is brilliant. Although I was diagnosed years ago, I was still thirty years old so it was still very late.

  • in reply to NAS93538

    Fingers crossed, I hope you get the accommodations you need. It's a shame more workplaces can't accept that ND people work really well if we're left alone and treated well. All we ask is to be treated well. That's all.

  • in reply to Cloud44

    I may have just got the start of success with access to work (after it taking 6 months to be seen). The person who assessed was really amazing and had recommendations for all sorts of help, apps and tech which might help. As I understand it my company won't need to get involved as less than 49 people so I'm skeptical about who is going to pay for it all.

    Will see how it goes. 

Reply
  • in reply to Cloud44

    I may have just got the start of success with access to work (after it taking 6 months to be seen). The person who assessed was really amazing and had recommendations for all sorts of help, apps and tech which might help. As I understand it my company won't need to get involved as less than 49 people so I'm skeptical about who is going to pay for it all.

    Will see how it goes. 

Children