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Late Diagnosis and Outcome

Jordee

Hi

I was diagnosed in May this year aged 46.

I referred myself for a diagnosis after many years of suspecting something was going on due to family and colleagues joking about my autistic behaviours.

I support people with autism at work and was always able to see and understand more than others why certain people felt a certain way or displayed behaviours as a result of something. That understanding came from my own difficulties and feelings from situations I experienced and could match that to those I supported.

Following the meeting, I was expecting a positive outcome of an autistic diagnosis as this would tick all the boxes that I had questions for regarding many aspects of my life.

When the confirmation came that I had high functioning autism it was both expected and a shock. What surprised me most was the shock aspect of it. It hit me like a ton of bricks and took weeks to come to terms with it. It was something I never expected to feel. It was meant to be relief and understanding. Instead I went through a whole grieving process as my life replayed out in my head and all those situations I've struggled suddenly had a whole new aspect to them.

What I'd like to know is, for others who were diagnosed later in life, did the confirmation of autism help/hinder/improve/devastate you in any way? 

Now I'm getting used to my label, I think it will help me. I've told my managers about it and as now they understand some of my complexities around certain things I do. I get certain allowances now which I felt I didn't get before.

I've not shared the news with anyone else. Not out of shame, but because I'm still me and once people know about the label, I don't want people thinking they have to be different around me or not be themselves when they joke about the things I do.

Regards, Lee

Parents
  • Former Member
    Former Member

    Hi Lee, my partner is 51 and his psychologist wants to screen now his daughter has a diagnosis. He already has ADHD and Anxiety hence the referral to psychologist in the first place.

    I'm "out" as a disability advocate with a DCD diagnosis...most people have no clue what DCD is so in some ways it's easier because there is no associated stigma.

    I have pretty much already accepted my partner has ASD...but I also know that some of his problems arise from 18 years of an abusive relationship with the mother of his children and the necessity of ongoing communication with her until SD16 turns 19. The 2.5 years of negotiation and two family court appearances to get SD16 assessed for ASD (SD16 wanted the assessment, her mother doesn't believe in these hidden disabilities) was enough to send me up the wall and I'm not triggered by her like he is. He spent 6 hours yesterday trying to send a 4 line email that should not even need to be sent if the situation was somewhere near normal.

    So I guess I'm saying that a diagnosis for him might have utility if it gets him more assistance and understanding, and given how it's common for him to find people assuming that he must have done things to deserve the ongoing abuse, it might be easier for him to say he's got ASD rather than residual trauma from domestic violence.

  • in reply to Former Member

    Hi

    It's interesting to see how people's situations can have an influence on the nature of their ASD. I suppose it's something to do with the Too Much Information or sensory overload. I know from experience I can be ridiculously OTT with what others would consider petty and insignificant and be remarkably chilled over more serious issues as I can see through the crap and think through it logically. But it goes to show that one of the criticisms of autism is a lack of empathy/sympathy/emotion is complete rubbish. I can be too emotionally involved I things especially when it comes to family. As for people who don't recognise an illness unless it physically obvious, they just frustrate me. The brain is still a part of the body and just a few minor chemical imbalances or faulty wiring can have a massive impact on someone's life. It took years to get my dad to understand why his nephew behaved the way he did and he was even more shocked when I told him I was diagnosed too recently.

Reply
  • in reply to Former Member

    Hi

    It's interesting to see how people's situations can have an influence on the nature of their ASD. I suppose it's something to do with the Too Much Information or sensory overload. I know from experience I can be ridiculously OTT with what others would consider petty and insignificant and be remarkably chilled over more serious issues as I can see through the crap and think through it logically. But it goes to show that one of the criticisms of autism is a lack of empathy/sympathy/emotion is complete rubbish. I can be too emotionally involved I things especially when it comes to family. As for people who don't recognise an illness unless it physically obvious, they just frustrate me. The brain is still a part of the body and just a few minor chemical imbalances or faulty wiring can have a massive impact on someone's life. It took years to get my dad to understand why his nephew behaved the way he did and he was even more shocked when I told him I was diagnosed too recently.

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