Feeling misunderstood

Oddly I saw this on an email from the local Autism charity in my area.  I really wish more events ran at weekends or evenings - as I'm unable to attend due to work.  Not sure why tey forget about those in work, as we definitely have struggles and don't always have flexibility in core hours

One thing I learned; Although I am definitely autisic, I am also me. Not everything about me is down to my autism and not every autistic trait is strong in me. 

Hope this helps.

I found Zoom groups where I could talk with others like who really understood. The one that has suited me best is the Autistic Elders 50+ group as below but there are others on Eventbrite. 

Hi TonyElk , 
 I know the feeling   Sounds like we are all in the quick sand together , overwhelmed overworked not enough time in the day .

Therapy sounds interesting , we had a chap through relate and although CBT not my favourite discipline he was a really nice chap and both my wife and got on well with him.I think he was an undiagnosed Aspie if I can say that. Good luck my friend 

Thank you for your advice.  That 4 point plan makes a lot of sense, especially the 3rd point about understanding my responses or behaviours to certain situations.  

Thank you Roy - I’m still trying to understand my autistic behaviours but try to take the positives out of every day, especially with family interactions.

Thanks Impreza and sorry for being a bit slow in replying - been on holiday and this week has been crazy what with returning home and then straight back to work.

It’s so good to know I’m not alone in feeling like this.  My wife and I have actually found a therapist who specialises in helping couples where one partner has autism.  Still early days but I hope that will overcome part of the feelings I have for not being heard and improve our understanding of autism.

Ok ambiguous use of words.

I was suggesting if it was used, my understanding is it should be part of a process, so it is one piece of information to help build a picture.

Thank you Bunny , I feel part of the tribe already , 

Hi, I was diagnosed last month at the age of 57, I was diagnosed with autism, no level was given, It seems to vary with different providers. I’m still slowly reading through the report, it obviously shows most of the things I’m not so good at. My ADOS-2  score was 19, it wasn’t really explained what it means. It just stated cut off 8.

I’ve told my very close family but no response really, the biggest reply was a text,  “okay.” I’m lucky, I have a partner, she has become more understanding. My mother still can’t say the word autism, I think she would burst into flames, she will mention it as, “with what you have.”

I just take each day as it comes and try to learn something from it, I recognise more of how I function as being autistic.behaviour.

Congratulations on your diagnosis and welcome! 

Hi TonyElk,

Am very much in the same boat , 50 year old man with level 1 ASD confirmed last week . Think this is the old Aspergers diagnosis if I can use the term 

I don't know about the 12 score but as you said all the past is starting to make sense but I want to be able to share with others my experience. Parents don't want to know , friends don't understand ,Autism  wife doesnt listen etc . Like you say not feeling heard at all , don't want a shoulder to cry on just a chance to chat

So thank you for posting nice to feel we aren't alone and we have the Autism community for support 

Stuart333 said:

ADOS-2 should be part of the assessment process.

There's no requirement for every adult autism assessment to include use of the ADOS-2.

Per NICE guidelines, it's one of several formal tools that assessors can consider using to help with more complex adult diagnoses and assessments.

Tonyelk142 said:

what, after all, is a pretty significant life event

I agree with you; even if people do not fully comprehend the implications, impact and details of someone's diagnosis: it is the decent thing to be respectful of the fact that someone has shared their all-important to them news.

I am involved with a community service organisation where many of my fellow members may be decades / a generation older than I am.  I cannot fully comprehend the reality of everyone's day-to-day lives / worries / concerns / challenges.  However, the minute I realise someone is telling me about a physical / mental health issue, or a relationship struggle - I make sure to stop what I am doing and really listen carefully (asking a few relevant questions when they have finished recounting their story - to help the person know they were heard and their situation was properly considered - even though it might be from my place of limited directly relevant experience).  

The next time I see them (not by text or email), I try to check-in with the person to see how things are going.  Not least, because you never know how many people (maybe only a limited number) they might have had the opportunity to speak with in person since your last time of meeting them.

Having reflected upon some of those potentially mismatched experience conversations with seniors - it has made me think a little differently about how I introduce my Autism diagnosis news to people (trying to help them to understand it is still very much a big processing point for me as I acclimatise to the news).

Recently, I have tried introducing the topic of learning about my Autism diagnosis by starting with saying 4 things:

1) my news is still quite fresh for me,

2) there is still a lot more for me to learn,

3) I am still working out how best to help people understand the support and understanding which I may sometimes need, and

4) that I am still experimenting with my suitable reasonable adjustments.

This approach seems to help more quickly sort people into 2 groups:

a) those who take the trouble to have a respectful conversation about my news, compared with 

b) the others ...who cannot be bothered (saves everyone some time trying to make a conversation work to "nowhere").

ADOS-2 should be part of the assessment process. It is done by a behavioural expert. Module 4 is the bit for adults.

For info I got 15, but it is not a competition. On the various assessment measures you only need to get over the the threshold in order to get a diagnosis.

This measure on its own does not give a level. 

The different measures are listed in the DSM-5 or ICD-11. They are quite similar. You don't need to meet everything, but there are minimum requirements to get a positive assessment 

The ICD-11 does not have levels, the DSM-5 does but they may not be used in the UK as support needs vary and should be tailored to the individual.

From the internet:

Thank you Bunny for your advice and tips - I’ll certainly try to digest the links and details you’ve sent.  I do have a therapist that I’d been seeing before my diagnosis but what with it being summer holiday season we’ve not had a chance to catch up yet.  

Thank you Flam3S - really appreciate your feedback

Thanks guys - just to clarify my assessment was  ADOS 2 and my clinician has said a score over 10 is generally the cutoff point for diagnosing autism, done in conjunction with observations etc so it’s not purely about the numbers.

I had mine last week Thursday and honestly I feel the same, I’m still trying to come to terms with it which is a huge struggle. I joined this group because I did come seeking for advice and to share similar stories, but you are not alone with feeling like this.

Tonyelk142 said:

Now that I’ve had my diagnosis all my past experiences do seem to make more sense but I guess I still feel misunderstood - it seems no-one really wants to hear how I’m feeling or is showing me much empathy for what, after all, is a pretty significant life event.  I don’t want a shoulder to cry on as such

Ah I see, thanks Bunny, I didn’t read that yet but will check it out.