ADOS

[BrightWater]

Hello,

I am an adult who has been referred by NHS for an autism assessment with a company that uses ADOS. Please does any one have a website that covers what they will ask on ADOS? Or share your experiences of ADOS if that is not too much trouble?

Sorry for garbled post, very tired.

Oh hugs @BrightWater ! Have they told you a day?

I sincerely hope that you've been given a date and time so that you can plan your day and factor in time to process the info from the appointment.

Wishing you all the best @BrightWater 🌻

I am officially autistic. I am very, very happy!

I will receive my report within a few days and will have another follow up call next week for any questions I may have.

An OP I'm so happy for you. I can't imagine how awful the wait must have been for you.

@BrightWater

Hurrah!!! The wait is finally over 😀

It's good to read that you're happy with the outcome.

I'm glad you're happy. I hope the report helps.

@BrightWater wonderful news. I did comment earlier but have name changed.

Can I ask about your experience of the ADOS? Was it upsetting? Thorough? Unusual? Etc

It's so reassuring to have it in writing, however certain you were in your own mind. Congratulations!

Thank you, everyone. I am very happy with the outcome but part of me is sad that it was not identified until now. I haven't received the report yet so I anticipate a lot of difficult and mixed emotions when I read it.

Regarding the ADOS itself in response to @SirBlobby :

• Upsetting - it was a little upsetting when writing down all of the difficulties I recalled having as a child. Facing up to, naming and disclosing painful things was hard but necessary. It was also hard to say them out loud. The part of the assessment over video was not upsetting for me but I know that some friends got upset as they were frustrated with themselves for finding some parts difficult such as telling a story with the items they brought along. I felt uncomfortable but not upset.

• Thorough - in my opinion it was thorough because there were many different parts to it over a number of weeks, including paper questionnaires on camouflaging and such. I assume but do not know that the report will be thorough.

• Unusual - I cannot really comment on this because I have never had an assessment for neurodiversity before. However parts of it did seem to follow similar patterns of other assessments I've had in the past for depression and suchlike. The face to face (or video call) aspect was unusual for me regarding some of the activities such as reading the storybook with the assessor.

I hope my responses make sense. Please do ask more questions if you would like and I will do my best to answer honestly from my own perspective.

Struggling at present. The report has not yet come through but family life is so busy and my brain is so overloaded that I do not think I have the reserve capacity to read it anyway. I am also scared that I am always going to struggle because I do not know where or how to start addressing my diagnosed difficulties. Has anyone had counselling (paid or NHS) after a diagnosis? Or any kind of therapy? I feel as though I need to re-learn how to be in the world (not that I ever really understood it in the first place).

I saved the part of the report that I wanted to (in my case my childhood was difficult, but I don't need to read that over and over), so I saved the ADOS and the self report to a separate document/pdf.

I was sent a summary to give to people like my GP or uni, which I read/re read initially til I was coming to terms with being autistic.

Sorry to hear you are struggling BrightWater 💐

My private diagnosis came with some counselling sessions included. They have finished and I've just started privately with the same counsellor.

I've been struggling since my diagnosis in July. I'm finding it difficult to process it and counselling has brought to the surface significant childhood trauma. Which I knew was there, but has been boxed away in my brain until now.

I think it's definitely worth exploring some therapy, if you can access it. We can just about manage private, so haven't even bothered with the NHS. My experience of trying to get support through CAMHS for my child has been so difficult. I can't face that battle for myself.

I'd be interested in what replies you get re: coming to terms with the diagnosis/counselling etc. I'm really struggling with it too.

Thank you for sharing that @BrightWater
I've just had a re-referral for ADHD/ASD agreed to by my GP, she's referring me to Psychiatry UK this time instead of our awful local one.

I hope it goes well for you @SirBlobby and that things move quickly.

I am hoping my report arrives tomorrow. It will have implications for my work and beyond. I need time to process it.

I hope you get your report soon @BrightWater ! Good luck @SirBlobby , I'd be interested in what it's like with them.

I have my report and have read it a couple of times but am still taking it in really. It is hard to read back in black and white my difficulties but some sections did make me laugh as they were examples I gave of misunderstandings I have had in the past that are quite funny out of context. Anyway, the format of the report is basically: a copy of my childhood/developmental/initial questionnaire; a copy of my partner's questionnaire; a detailed summary of the initial phone call with my partner and me; a detailed summary of the ADOS, my responses and their observations; summary of their multidisciplinary team decision and which criteria were met for diagnosis (all); a long list of suggested reading, websites, YouTube videos etc on autism, late diagnosis and women. I have also been referred to their online 6 week post-diagnostic support group.

I have had to go through and highlight different sections because their observations are scattered throughout the summaries and I'm not much interested in the summaries of my answers because I remember them.

I am now loading up my Kindle with books on the subject.

I have a follow up call with them next week as well.

I had the call and it was fine but nothing very interesting as I have already done a lot of reading myself. They are going to get back to me regarding what post diagnostic support they offer apart from a 6 week remote group session. I find these Teams sessions very stressful and unhelpful. They are led by a psychologist and each week is a theme, e.g. What Is ASD, ASD And Anxiety, etc. There is me and 2 other women and 1 man. It was supposed to be women only or I would not have signed up to this one (there were different options) but they have not got back to me regarding how I can book onto another set of sessions. It is pretty poor to be frank. Very basic stuff on PowerPoint and the session leader is unable to keep to time and allows the same 2 people to completely dominate the sessions with their very specific anecdotes, queries and so on. I cannot get a word in. It is actually quite upsetting and perplexing...Who on earth thought this was a suitable and productive method of working with newly diagnosed autistic people.

I remain happy with my diagnosis but frustrated and upset with how this organisation (private but providing NHS services) is handling things. I wish I had the energy, never mind the funds, to source alternative provision.

I am so very tired.

I have a number of stressful things going on in life at present but I press on with them with energy and determination. So I am shocked to find myself in pretty much constant tears this evening due to a... disappointing Teams meeting?? How strange that this was the drop of water that cracked the dam.

Writing here helps I think. Almost but not really literally howling into the void I suppose.