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Post Diagnosis Support?

BumbleBee

Hi all, 

I was diagnosed with ASD earlier in the year. Even though it is something I have thought and believed my whole life, I feel like the diagnosis has turned me upside down and I feel like I don't understand myself anymore. It felt like the assessor saw things in me that I don't see myself, but in the report she wrote, nothing of the sort was described. I received a post-diagnosis email but there wasn't much on there either. I just want someone to talk to who knows Autism well and I can organise my thoughts and learn more about myself. I have tried reading things online but it just doesn't seem to be helping. I want somebody to talk to about it all that knows what they are talking about. I just don't know where to turn.. I feel so isolated and alienated from myself, did anybody else have this experience? I'm from the East Midlands, can anybody signpost me to something that may help? I tried a peer mentoring-type service, but once I signed up I heard nothing more from them, I have sent follow up emails with no response also.. I have joined local groups on Facebook but it all seems to be child-centred and parents looking for school placements. 

Any feedback would be greatly received, I don't want to keep feeling this way.

Parents

  • Hi Bumblebee,

    I can totally relate to your post. I’ve just joined this community and am also looking for post diagnosis support. 

    I was diagnosed in 2023, age 48. I’m a mum of two girls, who I suspect may also be on the spectrum and possibly my husband too. All my family are introverted, like to be at home, don’t have many friends. We’re all intelligent and did/do well at school, never had issues with learning.

    Like you, I sought a diagnosis after hearing more about autism in women and wondered whether it applied to me. Even though I paid for a private diagnosis, I was shocked and upset when told I was autistic. I’ve only told a few people and they seem dismissive and disbelieving. I’ve also looked for local support groups, but like you, find they are all about people wanting help for their children. I did send a post on the Facebook group of my local NAS group, asking to hear from late diagnosed autistic women and only one person replied. I haven’t contacted them as I feel anxious doing so!

    Just had our youngest’s last day at primary today, with a social gathering for the kids and parents afterwards. What a nightmare. I wanted to leave before I got there! I feel like such an oddball and think others are thinking exactly that about me. I can’t maintain friendships and get upset seeing other parents from my daughter’s school being chummy, laughing and chatting together.


    I think getting some professional help is the answer, too, although this does mean spending money. I will look in to this. 

    I hope you find some inner peace and hope you manage to get some professional help. I’d love to hear how you get on Slight smile

Reply

  • Hi Bumblebee,

    I can totally relate to your post. I’ve just joined this community and am also looking for post diagnosis support. 

    I was diagnosed in 2023, age 48. I’m a mum of two girls, who I suspect may also be on the spectrum and possibly my husband too. All my family are introverted, like to be at home, don’t have many friends. We’re all intelligent and did/do well at school, never had issues with learning.

    Like you, I sought a diagnosis after hearing more about autism in women and wondered whether it applied to me. Even though I paid for a private diagnosis, I was shocked and upset when told I was autistic. I’ve only told a few people and they seem dismissive and disbelieving. I’ve also looked for local support groups, but like you, find they are all about people wanting help for their children. I did send a post on the Facebook group of my local NAS group, asking to hear from late diagnosed autistic women and only one person replied. I haven’t contacted them as I feel anxious doing so!

    Just had our youngest’s last day at primary today, with a social gathering for the kids and parents afterwards. What a nightmare. I wanted to leave before I got there! I feel like such an oddball and think others are thinking exactly that about me. I can’t maintain friendships and get upset seeing other parents from my daughter’s school being chummy, laughing and chatting together.


    I think getting some professional help is the answer, too, although this does mean spending money. I will look in to this. 

    I hope you find some inner peace and hope you manage to get some professional help. I’d love to hear how you get on Slight smile

Children
  • in reply to Late discovered mum

    Have you listened to the Late Discovered Club podcast? The host Catherine Asta is a late discovered autistic woman and also a psychotherapist.

    She talks about some extremely relatable topics with her guests who are mostly late discovered neurodivergent women.

    It has helped me so much to understand myself better and not feel so alone hearing other stories from late discovered women. Would definitely recommend giving it a listen if you haven't already!

  • in reply to Late discovered mum

    It's frustrating, isn't it. I was diagnosed last month and my interview for them to even consider post-diagnosis support is in the middle of September! Remember to count your lucky stars though - you have a husband similar to you and two lovely children. I'm biased, of course, but introverts are the best!