Please or to access all these features

Add post

Watch this thread

Save thread

Start a new thread

Flip thread

Hide thread

My feed

Active Unanswered threads

Getting started FAQ's

Unanswered threads Acronyms Talk guidelines

Hide shortcut buttons

Talk

Chat

Join the discussion and chat with other Mumsnetters about everyday life, relationships and parenting.

Flip

Original poster

Adult autism assessment

21 replies

Volcanite · 18/05/2019 22:23

I posted in special needs but didn't get any replies so re-posting here.

I have my first appointment with the adult autism assessment team on Tuesday. I feel I should make some notes to take with me but don't know where to start. I think of things but forget to write them down and then the 'thought' is lost.

I don't know what questionnaire(s) they use. I'm not taking a family member. I'm feeling so fearful that I will forget to mention something pertinent and I'll be marked as a timewaster. I always procrastinate and as ever have left this to the last minute.

Can anyone who has been through assessment give me some ideas of what to expect. My dd had asd diagnosed when she was 5 but I wasn't in the room for most of her assessments so nothing to draw on from that. I have very little memory of childhood. I just don't want to be dismissed because I can't remember and then articulate my thoughts on the day. I am very demand avoidant so the anxiety is really rising now.

OP posts:

MyNewBearTotoro · 18/05/2019 22:31

Sorry I don’t have any personal experience, but if you’re struggling to write it down could you use a list of common autism symptoms as a prompt?

You may not have problems with all of the areas listed but maybe try and highlight the areas you think relate most to you and give some examples of how this effects you in day to day life. You don’t have to write loads, maybe just an example or two for each part which you can have ready at the assessment.

A quick google brought up this article which has a list of common signs of autism in adults at the end: [https://www.additudemag.com/autism-spectrum-disorder-in-adults/]

If that one doesn’t feel right a google search will find others, maybe you will look at several.

Original poster

Volcanite · 19/05/2019 09:33

Thanks, that's a good link so I'll work from that. Hopefully I'll then have some coherent answers.

OP posts:

Prokupatuscrakedatus · 19/05/2019 10:02

Autism support groups have sections on how to prepare for initial assessments.
example
example 2

TreadingThePrimrosePath · 19/05/2019 10:22

My DD was assessed as an adult. She made detailed notes about specifics she struggled with, and things that she did/perceived or interpreted differently to NTs that had been a revelation to her.
Talking with me and her friends over a few months helped her compile her notes.

Starryskiesinthesky · 19/05/2019 10:24

Try not to worry. They should ask all the relevant questions and if you don't know the answers it is fine.

MorrisZapp · 19/05/2019 10:26

Do you mind me asking what 'demand avoidant' means? I have a family member this may apply to.

MorrisZapp · 19/05/2019 10:29

Ignore me, I've googled it. It's exactly what I thought it was.

Grasspigeons · 19/05/2019 10:30

I cant tell you about adult assessment. But i did sit through my childs assessments. It was really structured questions and the person was skilled at questioning so it was quite hard to forget. The only thing that would be helpful is we took the 'red book' with us as there were questions about the early months. I dont know if the adult assessment is like that but can you access your own red book or are you on talking terms with a parent who could answer some questions in advance about birth weight, pregancy complications and if milestones were met in the normal timeframe. Then take in a bit of paper with those answers. We also took in some early school reports.

TreadingThePrimrosePath · 19/05/2019 12:15

Don’t worry if you have no data or memories of your childhood, a friend went through the process a few years back and like me, she’s pushing 60 and predates Red Books.
Think about why you want the dx? What triggered your decision?
what do you find hard? (demand avoidant is one of the ways of recognising when something is overloading you)
What strategies have you developed over the years to help you cope, to reduce the stress? Crochet? Headphones? Fiddling? List making? The possibilities are endless!
What do you find makes you feel like an alien?
You can’t get this wrong, you are the expert on you and no one else sees the world through your eyes. It’s the professionals’ job to ask the right questions.

KneelJustKneel · 19/05/2019 12:17

Ive wondered about seeking a diagnosis, so following. but more than that I think I need to afapt life to suit me more.

RedSheep73 · 19/05/2019 12:21

If you don't mind me asking, how did you manage to get a referral? You must have had stuff to say to convince a GP, or is it as easy as 'can you refer me to be tested for autism'?

TreadingThePrimrosePath · 19/05/2019 12:29

DD found it useful, more because she felt there was now a reason why she was different rather than just being malfunctioning and broken.
Why sometimes she could cope and excel, other times she had a meltdown. Her brother had a dx at primary, but he presented very differently.
She’s also much more confident when employing her coping strategies, rather than apologetic or unwilling to implement something she needs.

Original poster

Volcanite · 19/05/2019 17:18

Thank you all this gives me some great pointers. I get frozen in panic sometimes and don't know where to start.

Re referral I went to the GP, cried so much I could barely speak and got referred. I think they just wanted me gone! I said that i had lifelong 'depression' that never improved despite extensive medication and therapy and that I felt it was something more, possibly autism and I wanted to be referred. I rarely cry, it was quite frankly humiliating.

I was referred in January, the surgery didn't send the referral until I chased in March and an appointment for end of May followed quickly. I was expecting at least a year wait. Family history is my daughter has and and more than likely my mother too. The behaviours all three of us exhibit are so 'normal' to me that it has taken a good six years of Mumsnet reading to think perhaps it's more than me being a broken person. Shitting myself now I actually have an appointment.

OP posts:

FaithInfinity · 19/05/2019 17:57

Do you know what assessment you are having? I had a DISCO assessment a few years ago. She asked me lots of questions about my childhood, developmental stages like physical issues, social issues, development, then how I was when I got older...then more about my current issues like work, current social issues. I started to mask initially but it was quite intense and I couldn’t keep it up for that long. Some of her observations were from what I said, some from how I presented. She put the info in an algorithm and it confirmed that I am autistic.

Like you, I’d struggled for years with anxiety and low mood, never felt great about myself. A diagnosis hasn’t got rid of it completely but it’s really helped me understand who I am and be much kinder to myself. Hope that helps.

Original poster

Volcanite · 19/05/2019 19:10

I'm not sure what assesment it will be. I have recently been given my secondary school reports so I have a bit of an outside perspective of how I presented as a teenager. I feel really embarrassed when I think back on my past behaviour so have really blocked it out which is probably adding to the worry about having to delve into it again. I've got through worse but I can't shake off the feeling that I'm just a crap person and I'll be wasting their time.

OP posts:

Drogonssmile · 21/05/2019 08:10

I received my letter yesterday saying my referral had been accepted. I'm excited and scared all at once! I'm expecting to wait about 4 months for my assessment. I'm 37 and have felt "abnormal" for 25 years. I'm hoping this is the beginning of some resolution for me and my family. Good luck OP.

tobee · 21/05/2019 08:21

@Volcanite my dd went for assessment a couple of years ago (age 22). The DISCO method was used. I went with her and was surprised to be in nearly all the time. It was more like a long structured chat about her. The assessor skilfully drew out memories we had both forgotten. She very much put us both at ease. The assessment took nearly 4 hours. At the end we were told the diagnosis. It didn't matter that we weren't sure of some answers or forgot some things. A lot was also about behaviours in the here and now.

After a few days a draft report was sent to dd. Then some time was given and either of us could change or add stuff to the draft before the final report was written.

Good luck and please try not to worry.

KneelJustKneel · 21/05/2019 08:54

Did you all just go to the gp and ask for one?

Im really worried about doing that but as my daughters being diagnosed more cogs are falling into place. Part of me isnt sure of the difference it will make but it might help in myh head

Do the same people do adhd? Im sure im add ....

Original poster

Volcanite · 22/05/2019 20:58

Good luck Drogonssmile, I'm that age and have never felt 'normal'. I have two more appointments so time will tell. I have ADD traits too KneelJustKneel. Worth asking your GP.

OP posts:

FaithInfinity · 22/05/2019 22:46

I did Kneel. I went with a list of reasons I thought I was. My GP was skeptical but agreed to do the referral. It was a long waiting list but I got my diagnosis.

Drogonssmile · 29/05/2019 19:49

Thanks @Volcanite @KneelJustKneel I asked my GP and although she's great and I have no issues with her, she did a bit of a look at me. I had to ask my psychotherapist in the end and he was all for it.

The problem is that as autism has become more widely recognised, and shown on tv, a lot of people have "jumped on the bandwagon" and when I worked in paediatrics particularly, a diagnosis of ADHD was highly sought after as an alternative to parenting! Therefore some health professionals can be a bit about people asking for diagnosis.

Also, as a woman who has learnt very well to hide their differences, it can be quite a shock to someone who doesn't know you well. Even my own dad (who I have never lived with) doesn't understand why I am pursuing a diagnosis as outwardly I seem quite "normal". However both my mum and DH are 100% behind me and in favour of it.

I guess what I am trying to say is it isn't easy but keep fighting for it.

Flip