Post Diagnosis Support?

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!

IrishInManchesterUK said:

speaks volumes about the utter contempt that these healthcare “professionals” have for people with autism, are simply refusing to understand our issues,

This may be true of some healthcare professionals but I think that it is also quite a human trait to grow tired of all the needy people who do not accept the treatments (even if it is to read a book) or get any better (I guess you never get "better" from autism) and become dissilusioned with the benefit of trying to help us.

I have had 2 therapists out of 4 over the years who I believed were genuinly caring and wanted to help. The other 2 were less educated about autism and thus their approach was ineffective but I cut them off pretty quickly once I worked this out.

If you are reliant on the NHS then you are pretty stuck as you get what you are given so I can see this could be an issue for some, but if you can go private then some research and informed decision making relating to who you use is a great help and you are likely to get someone who does care enough to be effective.

This does also bring to light the underlying cause of why so many therapists don't seem to "care" and I think it is because for them it is just a job.

Like almost anyone I know with a day job it is a drudge - mostly you do what you do to pay the bills and don't take much pleasure from it or detive much pleasure from it, so I suspect this aspect will reflect in the way they deliver their "care" to you - they will keep it professional enough not to get into trouble but they don't really get invested in you.

Is this ethical and moral? I don't think a lack of caring about people would be considered as so. If there were outright prejudice that is expressed and acted on then yes, it crosses the line.

If only we were not so hard to work with then I think it would be a lot easier but I know so many here are stubborn as a mule and I would think this gets reflected in how we act when being treated too.

Therapists are just people and prone to all their failings, but if they cross the lines then they need to be held accountable and that is on us to do.

The fact that “therapy” is so expensive and the fact that people are just given super long books to read, speaks volumes about the utter contempt that these healthcare “professionals” have for people with autism, are simply refusing to understand our issues, which goes way beyond just not caring, where they claim to not have the time (a lame excuse), where many businesses claim that they don’t have time to be “hand-holding” people with mental health issues and hidden disabilities like autism, shows and reveals their underlying prejudiced (hypocritical) attitudes that they believe that autism, hidden disabilities and mental health issues are “not real” and are “imagined” giving them the green light (in their minds) to label us as being “freaks and weirdos” - mere education of the general public on these issues is simply not going to dispel the very real prejudice and discrimination that is out there against people with autism, unless it is in conjunction with some very draconian and well-enforced laws to protect us and our rights as autistic people, because this is an ethical and moral issue - just look at the parallels between autistic people and LGBTQI+ people and how we secured our rights (which I know something about as I’m gay myself) 

This feels very similar to me. I don't want to see Autism ( for myself)  as a disability, just a point of difference. I see different as positive & interesting. This is keeping me positive as i go through my day to day life. I've found things post diagnosis that are improving my life so thats good. Noise cancelling headphones are a game changer for me. This is another positive. This way of thinking is helping me to go forward in life.

Thanks JT

I have the same story as you, diagnosed at 40. I receeded and didn't like the label so I've mostly kept it to myself. I've found that instead of telling people 'im autistic so I need...', instead I just not that 'i have sensory differences so I need...' for example.

For me the label and stigma are disabling, not my brain. Thwi has helped me a lot.

Good luck. Feel free to reach out if you need someone to talk to directly

Welcome Stewart, from a fellow newly diagnosed 50 something!

Hello All,

This is the first time i've been on the forum & i have to say this feed is really interesting & relevant to me. Just like Bumblebee & some others i have a had a late diagnosis in January this year ( 53 yo).I too thought that once i had a diagnosis then it would be followed by lots of support & help & it just wasn't. I have found this quite disappointing & distressing. My wife suggested i might be Autistic, i have always had meltdowns & i wanted a way of dealing with these as it's distressing for everyone in the house & i didn't want to put my family through this anymore.I went through quite a grieving period post diagnosis but i am starting to come out of it now. I had never heard of masking but i now realise i've done that all of my life. My wife & I have found a couples counsellor who is an Autism specialist & this is helping quite a lot.

My back story is that i don't want to be Autistic & i have found the process quite distressing. I have always been different, thought different, dressed different, been interested in unusual things. This has been my superpower in life. I found school very difficult & didn't conform or fit in. To be told i was Autistic took me by complete surprise & i questioned everything i thought i knew about myself. I lost all of my confidence & withdrew completely from the world. I am now starting to come out of that & i'm starting to feel ready to take on the world again. I don't really tell anyone i'm Autistic (apart from close family & the odd friend) as i don't want to be defined by it. I was happy being individual me & i want to get back to being that person. Being different is brilliant & i am drawn to people who think different. All i can add is just enjoy being unique you.

Iain said:

. Imposter syndrome

5 years on and I'm still prone to having doubts about the diagnosis. Autistic X doesn't help with that. It can be full of people doing wonderful things  whilst having the worst sensory and other symptoms an autistic person could ever have.

I just had a post diagnosis appointment, and was given a large booklet to read. 

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!

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 

Hi  BumbleBee, If in the future you find you have money to put aside for speaking to someone, I have found talking to someone who has experience working with ND folk really helpful (the person I was seeing also had a late diagnosis and works a lot with my demographic, so those are a couple of things to consider if looking for support yourself to talk it though. 

Also, if speaking is not your thing, people have suggested to me, I can write notes down during the session, things like that, so there are people out there happy to make accommodations if you feel it is difficult to know where to begin.

 A client feeling lost and confused, shouldn't be an issue for a decent councillor, it's something they will have heard before. I know for me it doesn't generally help to read this, but I have felt, still occasionally feel how you describe, I'm not in your shoes (metaphorically) but I think I have worn some quite like them, and might end up wearing them at times when I least expect, or just when I think I feel quite a bit better.

You mentioned the service you got in touch with did not respond, I also had a similar experience, however they did get back in touch approx. 2 months after my self-referral, and suggested it was another 1-2 months to see the service, so it is possible they are under resourced, I hope they will get back in with you soon. 

Lastly, have you come across the NHS search tool for mental health services, granted there may be a wait for any services, but they may still be helpful when the appointment time come around. Mental health - NHS (www.nhs.uk) (apologies if this has been suggested)

Through the NHS tool above, I found something that was able to see me sooner for group type therapy -  I also asked the GP referral person if they could look for any services in the area I might be able to access, outcome pending, but they were open to that. 

Appreciate the above is my experience, and different countries/county's will turn up different results.

Hope some of that is helpful for you/ others at a similar stage.

(I am only 2/3 months post late diagnosis of Autism.)

I had a couple of sheets of A4 paper basically confirming that I'm autistic, with a brief potted history of my life, some of which was wrong. I would of liked more information too, but even in 2012 there was little known about autism in women. My learning difficulties report done some 6 years earlier was pages and pages long, but it was all full of jargon that nobody understood. I'd love to get rediagnosed or something similar.

NAS94852 said:

The psychologist told me to disclose to my current workplace, but I feel really uncomfortable doing that.

There is no requirement for you to do this unless you having a meltdown would put people at risk in some way in which case I would get some professional advice on whether to do this or not.

If work is not very friendly to autists then keeping quiet is a good survival technique but if you think getting them to make some minor changes (eg allowing you to wear noise cancelling headphones or changing the lighting so it doesn't give you a headache) then you may want to tell them and ask for these changes under the requirement called "reasonable adjustments" which they have an obligation to try to meet if practical.

NAS94852 said:

I have panic attacks and the latest one was bad so I thought I will go for therapy. It is very expensive,

Anxiety is the root cause of panic attacks and something most of us have struggles with. There is one book I can recommend if you are good with self help:

Asperger Syndrome and Anxiety - A Guide to Successful Stress Management - Nick Dubin (2009)
ISBN 9781843108955

As for therapy, the rates I'm seeing are about £45-90/hour for a certified psychotherapist in the UK. There are load to choose from if you use: https://www.psychologytoday.com/gb/counselling  For reference I pay £60/hour.

chose your location, click on the FILTER box and select autism and any other issues you have and it will give you a list of therapists who meet the criteria. I would advise looking at their qualifications, expertise and experience to see if they seem professional enough then book a trial session with any that "feel" better than the others to you.

NAS94852 said:

I do not know why I am so 'rejected" or left out over and over again

This lack of social know-how is a common autistic trait and stems from the way our brains developed differently to our neurotypical peers - they found their sensory filters became more selective and this allowed them a different focus on things that we struggled to achieve - we tend to get swamped by inputs.

This allowed them to pick up on social cues better, "get" one another and got a lot more practice with the social interactions than us, not helped by our preference for our own company most of the time.

If it really bugs you then you can learn the skills - it means you have to work harder at catching what is going on but lets you mask effectively and blend in when needed - useful for a lot of situations if you need to fit it. A good guide for this is the book:

The Unwritten Rules of Social Relationships - Decoding Social Mysteries Through the Unique Perspectives of Autism - Temple Grandin, Sean Barron (2005)
ISBN: 9781941765388

I think I've covered most of what you talked about here - you will inevitably have lots of questions and other things to talk about so fire away and you will get responses from the community here.

You see, you have found your people at last!

Thank you so much. I have bought the book. Your post gave me a bit of hope and encouragement. I will keep coming back here. 

Aw thank you Mark! 

I understand how you feel though! I have been left out time after time, and at first I felt the same way about fitting in here too - but already I am slowly starting to feel more and more comfortable here, and it is nice to hear about other people's experiences and it's comforting to find similarities too. Regarding work though, of course I can't speak on behalf of any other workplace - but my manager has been wonderful with me throughout everything, she accommodates my needs as much as she can, and she's patient with me too. When I was first diagnosed I asked about work - and the lady gave me a booklet on Autism in the workplace, and I gave that to my manager because (from my manager) they weren't very knowledgeable on Autism and how to support people in the workplace. I personally don't feel like I need much support, other than explaining things to me in more detail so I understand things better or don't spiral into overthinking - and supporting me with routine and change.  

I have been seeking a support group too but I haven't had an awful lot of luck with it. I have just found a "social space" online which I'm quite looking forward to - I've not experienced it yet, my first meet is tomorrow after work, I'm feeling quite hopeful! It took some digging and some emailing but at least there is something, I hope you find something too! 

You totally fit in, and so does BumbleBee.

NAS94852 said:

I am scared that I won't fit in here either. 

You already fit in here. You are just like many of us although it is worth noting that we are an odd mix of people with different traits, experiences andd situations so are not all the same.

You are anonymous here so you have no exposure as such - just ask what you want, share what you are comfortable with and participate as you feel comfortable. Most of us are quite accepting, some are blunt (I have that capacity at times) and there are a handful who can be controvertial, but overall it is a really nice place to spend some time and feel amongst people who "get" you.

NAS94852 said:

I was just diagnosed myself by a psychologist and in one way I can see why I struggled all my life and in another way, I feel completely turned upside down and don't know what to do with it.

This is quite a common reaction. It is worth remembering that nothing has changed and you are still the same person, but you now have knowledge that empowers you to do more about what is troubling you.

I would recommend reading the following:

Very Late Diagnosis of Asperger Syndrome - Wylie, Philip_ Beardon, Luke_ Heath, Sara  (2014)
ISBN 9781849054331

This should give you a decent grounding in autism and the experiences of others to realise that you are actually now in a much better place and are developing the tools to make your life better.

For me the most progress I made was when I started working with a therapist who had experience with autistism (she had autistic children which was a big plus) and I was able to work through traumas with her, understand (or unpack in therapy terms) these situations and come to terms with them which enabled me to remove some of the coping mechanisms I was using unknowingly.

Will you never improve? You will if you work on yourself.

Can you apply for certain jobs? Of course you can, but some jobs come with more stress on your autistic traits so may be best avoided. As with all jobs, they come with a price.

Don't have all the traits of autism? Most don't - it is the nature of a spectrum condition. ie you have some of the traits at different levels of intensity. There is no template for it.

Is your diagnosis accurate? Probably. Imposter syndrome is common and is explained in the book. Trust in the results from the professionals.

There are a load more things you talk about that I don't have space here to answer but I'm sure others will join in with advice.

I can understand your feelings. I was just diagnosed myself by a psychologist and in one way I can see why I struggled all my life and in another way, I feel completely turned upside down and don't know what to do with it. Does my diagnosis mean I am weird and alienated and that my struggles will never improve? Does it mean I can't apply for certain jobs? And some autistic traits don't seem to apply to me so is my diagnosis even accurate? I feel like I don't know how to "act" now. Maybe I have been masking all my life and didn't know it and now that I am diagnosed I don't have to mask so now I don't know what to do. I did disclose my diagnosis to my sisters and husband and they had already suspected I was autistic and never said anything. I was shocked. The psychologist told me to disclose to my current workplace, but I feel really uncomfortable doing that. My main issue for going to a psychologist was because I have panic attacks and the latest one was bad so I thought I will go for therapy. It is very expensive, but I thought it will help me. After our first consultatoin, she said she wanted to do some pyschological assessments. Thats how I found out. All my life, I have had major trouble fitting in. People like me but are not friends. I am routinely left out. I ask to hangout with someone I  meet at work or in a group, and they turn me down over and over . Or we do hang out and then they don't want to again. So I do not know why I am so 'rejected" or left out over and over again. Autism fits this. It explains it. So I feel more understanding about myself, but now what? They psychologist told me to join a support group with autistic adults who were diagnosed later in life. So that is why I am joining here. But to tell you the truth, I am scared that I won't fit in here either.  So this is how my diagnosis has turned me upside down. 

That’s so kind of you - thank you

I hope you have a lovely day - I think you are going to work all this out and be so much happier in the long run as a result