Waiting Lists and Questions about ASD assessment

ellie_rsg · December 2023

How long did you have to wait to have your ASD assessment? I don't actually remember how long it's been.. perhaps a year or 2 now. I'm in South Wales anyone else waiting? I also have other questions.

What was the assessment like (so i don't stress out and so i can plan ahead)

How long did it take (both waiting and the assessment itself)

What happened afterwards

What if i don't have people they can speak to about me and my childhood (ie. not good relationship with parents, always masked etc, only meltdown when i was alone, never really spoke in school so teachers don't even know me well)

Bettahm · December 2023

Mine was done during covid lockdown so yours will probably be different but they did it online on Microsoft teams. It was 4 hours one day then another 4 hours a few days later. Two of them on the screen but it wasnt stressful or anything, fairly casual. They ask about your work and your struggles and your life, early life to present, friends, family etc. I have no family or friends so they asked in advance if I had old photos of me from 18 months old to 6 years old, which I did, so they looked at those and commented and asked questions.
8 hours in total sounds long but they were making notes as I answered.
Remember they have a lot of info from the form you sent in, and I added extra notes with mine so I'd told them about early life, school, jobs I'd had, problems, struggles etc.
I waited two years from sending the form back to full diagnosis but they said if they accept your form for the diagnosis bit they strongly suspect your autistic.

ellie_rsg · December 2023

Bettahm said:

Mine was done during covid lockdown so yours will probably be different but they did it online on Microsoft teams. It was 4 hours one day then another 4 hours a few days later. Two of them on the screen but it wasnt stressful or anything, fairly casual. They ask about your work and your struggles and your life, early life to present, friends, family etc. I have no family or friends so they asked in advance if I had old photos of me from 18 months old to 6 years old, which I did, so they looked at those and commented and asked questions.
8 hours in total sounds long but they were making notes as I answered.
Remember they have a lot of info from the form you sent in, and I added extra notes with mine so I'd told them about early life, school, jobs I'd had, problems, struggles etc.
I waited two years from sending the form back to full diagnosis but they said if they accept your form for the diagnosis bit they strongly suspect your autistic.

Thank you so much! Really helpful. I have photos and videos for the evidence too. Gunna make a list also

Bettahm · December 2023

ellie_rsg said:

Bettahm said:

Mine was done during covid lockdown so yours will probably be different but they did it online on Microsoft teams. It was 4 hours one day then another 4 hours a few days later. Two of them on the screen but it wasnt stressful or anything, fairly casual. They ask about your work and your struggles and your life, early life to present, friends, family etc. I have no family or friends so they asked in advance if I had old photos of me from 18 months old to 6 years old, which I did, so they looked at those and commented and asked questions.
8 hours in total sounds long but they were making notes as I answered.
Remember they have a lot of info from the form you sent in, and I added extra notes with mine so I'd told them about early life, school, jobs I'd had, problems, struggles etc.
I waited two years from sending the form back to full diagnosis but they said if they accept your form for the diagnosis bit they strongly suspect your autistic.

Thank you so much! Really helpful. I have photos and videos for the evidence too. Gunna make a list also

Glad its helped . Some more folks will probably come along and tell you their experience.
Best wishes.

ellie_rsg · December 2023

Bettahm said:

ellie_rsg said:

Bettahm said:

Mine was done during covid lockdown so yours will probably be different but they did it online on Microsoft teams. It was 4 hours one day then another 4 hours a few days later. Two of them on the screen but it wasnt stressful or anything, fairly casual. They ask about your work and your struggles and your life, early life to present, friends, family etc. I have no family or friends so they asked in advance if I had old photos of me from 18 months old to 6 years old, which I did, so they looked at those and commented and asked questions.
8 hours in total sounds long but they were making notes as I answered.
Remember they have a lot of info from the form you sent in, and I added extra notes with mine so I'd told them about early life, school, jobs I'd had, problems, struggles etc.
I waited two years from sending the form back to full diagnosis but they said if they accept your form for the diagnosis bit they strongly suspect your autistic.

Thank you so much! Really helpful. I have photos and videos for the evidence too. Gunna make a list also

Glad its helped . Some more folks will probably come along and tell you their experience.
Best wishes.

Only thing is. I don't recall sending a form. I had a referral from an OT done for me. I did recently have a letter saying they are keeping in touch just letting me know im still on the list etc

Bettahm · December 2023

ellie_rsg said:

Bettahm said:

ellie_rsg said:

Bettahm said:

Mine was done during covid lockdown so yours will probably be different but they did it online on Microsoft teams. It was 4 hours one day then another 4 hours a few days later. Two of them on the screen but it wasnt stressful or anything, fairly casual. They ask about your work and your struggles and your life, early life to present, friends, family etc. I have no family or friends so they asked in advance if I had old photos of me from 18 months old to 6 years old, which I did, so they looked at those and commented and asked questions.
8 hours in total sounds long but they were making notes as I answered.
Remember they have a lot of info from the form you sent in, and I added extra notes with mine so I'd told them about early life, school, jobs I'd had, problems, struggles etc.
I waited two years from sending the form back to full diagnosis but they said if they accept your form for the diagnosis bit they strongly suspect your autistic.

Thank you so much! Really helpful. I have photos and videos for the evidence too. Gunna make a list also

Glad its helped . Some more folks will probably come along and tell you their experience.
Best wishes.

Only thing is. I don't recall sending a form. I had a referral from an OT done for me. I did recently have a letter saying they are keeping in touch just letting me know im still on the list etc

As long as your on the list. I guess different counties maybe use different methods. I was referred by steps 2 change and the diagnostic centre sent the form. This was 2019, got the full diagnosis 2021. But if your referral is accepted by the diagnostic centre, same applies, they strongly suspect you're autistic.
Like they dont waste their time! Saw a video on YouTube said 1 in 50 people are on the spectrum. Always been that way I guess but society is more aware of it now.

Bettahm · December 2023

@ellie_rsg
Just another thought that my diagnosis may have been a little unconventional... Steps2Change told me to get gp to do the referral but he wouldn't do it!
So s2c did it, and the diagnostic centre sent me the form.
Possibly why you had no form. But yes, start making notes, like writing your autistic autobiography if you like. How being on this 'alien' planet affects you.

Jimm_Alumni · December 2023

Not sure if it's applicable, but in my local trust the same team handles Adult ASD and Adult ADHD referrals. We waited 18 months, was told it'd be another 2 years at least, before my partner got a bonus which we put towards a private diagnosis (around £700 last year).

The assessment itself was done quite well. 3 hours, they had already taken history evidence from my parents and my partner before the assessment itself before going through it in detail with me. I know there was a scandal about private ADHD assessments earlier this year but me and my partner were very careful in our clinic selection. I then sent the diagnosis report to the local trust Adult ASD/ADHD clinic, who reviewed and accepted it.

It's really unfortunate how long the waiting times are. Mental Health in the NHS was already underfunded and then Covid happened. In my opinion, I feel like Covid disrupted a lot of peoples routines, and often people with ASD/ADHD do not deal well with disruption. Many people who had naturally built up coping mechanisms suddenly had those knocked away and realised they weren't actually neurotypical.

Waiting Lists and Questions about ASD assessment

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