Post diagnosis - what next?

Aside from this website, there is very little (if any) support for late diagnosis adult autism in later life, including post-diagnostic assessment to (properly) assess support needs post-diagnosis, both through the public or private sector/charities - even these private/charity sources of support require a GP referral which is almost impossible to get a GP appointment post-Covid, because the focus is on children’s autism and not adults - there is a reluctance, a point-blank refusal to understand the very nature of autism on the part of support providers to properly support adults living with autism, funding issues and other priorities being one of many issues, so there is a clear need for this support of and from properly trained professionals with proper sources of funding put in place - as more adults are going to be diagnosed in later life as methods of diagnosis and with further advances in science become known, together with many other things being revealed, coupled with an ageing autistic population, this is going to become a serious problem in the coming years 

Hi DA. 

I’m female and late diagnosed too, aged 64 at the time. For me it has been incredibly illuminating and practically helpful. It has for example revolutionised my relationship with the nhs and I’m now accessing treatments I’ve needed for years (eg: fibromyalgia diagnosed and am accessing treatments, access at last to a sleep specialist and psychological therapy underway now with two different teams). Many of my problems with them were related to their intractable communication systems but with the official diagnosis I requested and was granted reasonable adjustments which enabled me to communicate with them in ways I could use as opposed to their straightjacket telephone systems which I found impossible and impenetrable. I’m fortunate too that my ASC assessor has continued to support me in all sorts of practical ways which are making life so much easier. 

Good luck

Emma

Hi DA.

I am 48 and have just been diagnosed too.  I am post menopause due to surgical menopause 9 years ago.

I'm also wondering where to start.  So similarly I am doing some reading, particularly around other autistic women's stories.  I've just had a look on the NAS website and watched a few of the videos in the NowIKnow campaign.  Whilst each person has their own story I found that each of them had parts where I was nodding along in recognition, something which I'm not used to experiencing when listening to women's stories and perceptions generally.

Currently I'm just trying to work out where I am, what it means and whether I need to do anything next.  I've been offered a follow up meeting in a couple of weeks to go through things in more detail.  But I don't really know what I want from it yet.  So I'm reading up on something every day to try to understand where to go from here and whether anything needs to go anywhere from here.

Hiya,

im a 40 year old female. Just been diagnosed. And it’s a weird old time. Lots of emotions going on and what to do next. 
Im really lucky as have an autism therapist through my GP. Is it worth finding out if there’s something similar in your area? 

:) 

Hi DA 

I too am a woman who just recently got diagnosed, so we're roughly in the same boat. 

The question of 'What now?" comes up quite often and frankly I don't have any answers for you, but I do come on here every day to chat to people and share common experiences. 

I would recommend a guy who I follow on Twitter called Matthew - search for #ActuallyAutistic coach online and you'll find his website. I am in the process of doing one of his courses and it is quite interesting. He put me into a WhatsApp group with other people doing my coaching course and it is nice to be able to share experiences this way. 

Good luck at your next CMHT meeting. :)

I have just been diagnosed. I’m 44 and most likely perimenopausal too. I found a few TED talks and watching Christine McGuiness programme ‘unmasking my autism’ really interesting. 

SHZ said:

I wondered where to start now other than what was recommended in the report such as reading biographies from women with autism and this organisation/forum to read up on female autism.

There are a few books that may be interesting for you:

A straightforward guide to autism:

Understanding Autism For Dummies - Stephen Shore, Linda G. Rastelli, Temple Grandin (2006)
ISBN 0764525476

Understanding autism as a late diagnosed adult:

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

From a female perspective:

Autism in heels -  the untold story of a female life on the spectrum - O'Toole, Jennifer Cook (2018)
ISBN 9781510732841

Women and Girls with Autism Spectrum Disorder, Understanding Life Experiences from Early Childhood to Old Age - Sarah Hendrickx, Judith Gould (2015)
ISBN 9781849055475

SHZ said:

I am looking for some guidance on what to do next?

I would say to start writing up a list of things to ask in your next meeting.

If you have not already done some digging into what traits you have that are probably caused by autims then start here:

https://www.autism.org.uk/advice-and-guidance/what-is-autism

Think about the thinks you do that are difficult, different to others or a problem for you and see if they align with autistic traits - these are the things you will get most benefit from discussing in your meetings.

After you have drank your fill of knowledge then there will be plenty of questions - this forum is possibly the best I've come across in the world for its archives and people knowledgeable in dealing with issues, plus a generally awesome community that understands your situation because most of us live it too.