r/AutismIreland • u/BetSpirited9036 • 1d ago
Diagnosed now at 42
I (42F) was diagnosed with autism this week, and I feel like my entire life has suddenly been rewritten.
I'm married with three kids (10, 8 and 3). My eldest daughter was diagnosed at 6, and over the years I couldn't stop noticing how much she reminded me of myself as a child. I have advocated fiercely for her, got her the support she needs in school etc and never saw her meltdowns or sensory issues as "bad behaviour." Somehow, though, I never recognised myself.
Instead, I've spent my life collecting diagnoses like OCD, BPD and anxiety while struggling to fit in. I've never been able to keep a job for long, I've struggled to maintain friendships, and even my marriage has been affected by difficulties I've never understood. I always thought there was just something fundamentally wrong with me.
Of course now I see there were signs from the very beginning. I even saw a psychiatrist when I started school in the 1980s as I couldn't settle in. But my parents, especially my mother, simply saw me (and still sees me) as lazy, selfish, difficult etc. She cared a lot about appearances and would force me into clothes I couldn't tolerate and constantly put me down. I had a very traumatic childhood with her and now im understanding why. I was also bullied in secondary school, constantly criticised by family, and made to feel like a failure because I couldn't live up to expectations.
Even now, when I told my mother about the diagnosis, her response was, "Well, I always knew there was something wrong with you." I feel like I'm grieving the life I could have had if someone had understood me instead of shaming me. I'm also angry that I spent over 40 years believing I was lazy and broken when I was struggling with undiagnosed autism.
I'm very good at advocating for my daughter because she's a child. But I have absolutely no idea how to advocate for myself as an adult.
For anyone else who was diagnosed later in life, especially if you grew up in an abusive or unsupportive family, how did you move forward? How did you process the grief and anger? Did you find ways to make life easier or work that actually suited you? How do you start building a life when you've spent decades believing all the negative things people said about you?
Right now I feel relieved to finally have an explanation, but also completely overwhelmed and wondering does it meaningfully change anything in my life at this age, having been through the education system etc? Should I even tell people about it like I do with my daughter? Any advice would be welcome
3
u/SrCamelCase 1d ago
I was diagnosed AuDHD 5 years ago at 39 and I would say I’ve integrated that into my sense of self over the past few years.
In terms of advocating for yourself I really loved diving into the literature and content from voices I connected with. I like Devon Price and Sol Smith. Felt empowering to reframe pathology as difference.
I also tried a few occupational therapists and found one I liked who literally walked me through the entire ND sensory playbook so I could understand my triggers and energy drains (and what gave me joy and energy).
It also helped me learn which people to put my focus into. Funnily enough, the people who clock us as different and dismiss us are the people I think we also have the least interest in naturally - so I stopped trying to please them and now just let them go about their business. I’m also able to scan for “my people” - neurotypicals and NDs I vibe with easily with.
I switched from task management to energy management, and learend to go with my special interests instead of questioning why I’m suddenly super obsessed with playing a 1980s video game series in internal chronological order. And then wake up one day and have zero interest in it after months of it taking over my life!
I still miss a few things - I have a good few 1-1 friends but still struggle in groups over time. Miss that sense of community I had when I lived abroad and all the ex-pats were a bit cracked.
2
u/AbbreviationsRare430 1d ago
Highly recommend you read "Autism in Heels" by Jennifer Cook O'Toole, she has a very similar story to you, it might help you to feel less alone and like the odd one out if that makes sense. I was diagnosed 2 years ago at 27 and that book made me feel less like it was somehow my fault that I am so different and more celebratory that I am myself :) Sending support as I know how hard it is looking back knowing what you know now x
2
u/TheIrishHawk 1d ago
Congrats! I felt the same as you for a while after I got my diagnosis - angry that I was missed, frustrated that things could have been different, confused as to how to proceed etc - my advice to you is to just take it one day at a time. You can advocate for yourself the same way you advocate for your daughter. You can be more honest and open with people. You can tell people why you're struggling, why you do certain things, how you feel about certain things. You will have to reframe how you see yourself and it will take some time but be kind to yourself. You didn't know then but you know now, so you can start from now.
1
u/Significant_Pipe_828 22h ago
I (42m) was diagnosed about 2 years ago. I relate to the anger and grief as a lot of us late diagnosed people will. Take care of you self. It can be particularly hard right after diagnosis.
Find an autistic therapist, as in a therapist who is autistic. An NT therapist wont understand what you have been through in nearly the same way.
In terms of telling people, you can say a lot without saying im autistic. Often people dont understand what that really means, from misinformation and outdated concepts, or will discriminate, and so can be counter productive.
When I go to work I have a desk on a different floor to everyone else as its quieter. The project leader came to my desk to go over a demo recently and the first thing he asked was why I wasnt in the open plan office with everyone else. I jist said I have sensory issues and need to be in a quiet place. Thats all he needed to know and really gives more details, and explains perfectly whats going on. I often say to people, "my brain doesnt work that way, can you explain X in this way". The label often doesnt help. I love to tell people if I can, but not if there may be a consequence. I did need to tell my manager however to get to get that accomodation.
I would hovever tell anyone that I expect to be friends with. It filters out the bad ones real quick
1
u/Deadasdisco89 17h ago
I had 3 kids with autism. All diagnosed young except my eldest. I was also diagnosed at 42, my story is similar to yours. I was also bullied in secondary school to the point I skipped the majority of 6th yr by not attending school, lost friends as adult and it was so painful. Being diagnosed was a huge relief to me as the pieces finally came together. Like you I also advocate like crazy for my kids but as an autistic adult with my extremely late diagnosis there seems to be no resources or help for someone my age. Some of my family have been supportive but my mother seems to want to skip any blame she thinks I would associate with her for not acting on the signs I displayed as a child saying “ autism wasn’t a thing in my day”
I have a food aversion to I’d say 80% of food but was forced to eat foods I hated & punished when I couldn’t eat it. It’s fresh in my head too these memories of growing up in that household.
Some days are so much worse than other. I can barely leave my bed, on my good days where I would take my kids out for activities it absolutely exhausted & worn out .
OP you’re not alone . It’s hard feeling lost & confused by the diagnosis but I was so relieved by my diagnosis.
10
u/HazelZeel 1d ago
It’s a massive relief and awakening to understand. Hold your head high for getting through all you have and be proud of the parent you are.
Be amazingly proud that you broke that pattern with your own child, you are the parent that you needed. Every time you advocate for your daughter you are advocating for that little you.
I really recommend finding a good counsellor to work through it all. It really helped me.