Got a letter to attend a diagnostic appointment, but

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JonathanCampbell99
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09 Jan 2023, 11:52 am

Basically I got a letter today asking me to attend a Clinical ASD Diagnostic Appointment next week, and I don't know what to do, I would ask my grandmother but she doesn't believe that I have Autism and I don't think she'd take me down, I'm scared about approaching her cause I don't know what her reaction would be? It's also quite far too near the boarder with The Republic of Ireland, so I don't know what to do, I could get the bus down, but then I can't take my mum and would have to go on my own, cause my mum doesn't like the bus, at least if my grandmother took us down, my mum could go as well, I don't know what to do tbh, need to let the hospital know by the 12th of January or else I'll be taken off the waiting list and God knows if I'll get back onto it, it was 13 months since my online ASD Diagnostic assessment, but what came out of that was that I wasn't Autistic, so I'm a bit confused as to why I have a physical diagnostic appointment when the clinical psychologist confirmed it wasn't Autism??? She did think it was NVLD though, so that could be why.


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kraftiekortie
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09 Jan 2023, 11:55 am

If you really want this assessment very badly.....take the bus.

But, it would probably help if you had relatives with you.

I know it's a tough decision.

But...all in all....I would take the bus if you can't get your mother/grandmother to go with you.



JonathanCampbell99
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09 Jan 2023, 12:05 pm

kraftiekortie wrote:
If you really want this assessment very badly.....take the bus.

But, it would probably help if you had relatives with you.

I know it's a tough decision.

But...all in all....I would take the bus if you can't get your mother/grandmother to go with you.

Should I need my mother with me as it says on my letter to take someone who knows me well, where possible, so it's not an obligation, is it?


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IsabellaLinton
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09 Jan 2023, 12:40 pm

Can you Uber?

I used Uber for mine because I wasn’t allowed to drive after a stroke.

It was nice to have door-to-door service and not worry about parking.

I didn’t take anyone with me but my mum is in her 80s and kind of senile. Start gathering childhood info whether your mum ends up going or not. School reports and your baby book will help. They’ll want to know what age you achieved milestones like pointing, walking, talking, etc. and what you were like as a child including phobias, reaction to change, social reciprocity, etc.



JonathanCampbell99
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09 Jan 2023, 12:55 pm

IsabellaLinton wrote:
Can you Uber?

I used Uber for mine because I wasn’t allowed to drive after a stroke.

It was nice to have door-to-door service and not worry about parking.

I didn’t take anyone with me but my mum is in her 80s and kind of senile. Start gathering childhood info whether your mum ends up going or not. School reports and your baby book will help. They’ll want to know what age you achieved milestones like pointing, walking, talking, etc. and what you were like as a child including phobias, reaction to change, social reciprocity, etc.

I’ll just get the bus down, just don’t want to start a row with my grandmother over it tbh.


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IsabellaLinton
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09 Jan 2023, 1:04 pm

Tell them the situation, about your mother not going because you need to bus.

My daughter was sent some follow up questions about me online with a special encryption code and she was able to submit her answers that way without going. She’s lived with me longer than I ever lived with my mum, so they wanted her input.



JonathanCampbell99
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10 Jan 2023, 4:55 pm

I’m going to talk to my grandmother tomorrow and see if she’ll take me down and come in for the interview as I could use both my mum’s and her input especially considering I would have spent a lot of time with her when I was younger especially when I was at my aunt's house and had difficulties and things.


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11 Jan 2023, 7:09 am

hope you find a way to get this done, cheering you on!


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JonathanCampbell99
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12 Jan 2023, 6:40 pm

Update: Going down on the bus, but I won’t have anyone there with me, cause Mum doesn’t really like taking the bus down, will have my bro-in-law with me for comfort, but he doesn’t know me fully, he’s been with my sister for 4 years, what do I do then? I had my initial assessment back in December 2021, and it’s now the ADOS-2 Module 4, so don’t know how long I’ll be down there for, the letter only says that I need a family, friend or someone who knows me well where possible, so should they still take me down even if no one is coming into the room with me? I have wrote a few pages on things that affect me and I took the sensory processing disorder test and applied it to myself and I’m wondering if I should take it down too? Also talked to my grandmother too, didn’t end up in a row, but she says I’m a hypochondriac for thinking I having autism even when she keeps saying she thinks I have it, the more I’m reading up about Autism, the more I actually do I think I have it, because I’m relating back to times I had what I thought were tantrums, but I’m thinking they were meltdowns instead because I was frustrated, I’m also thinking about my interests too, my favourite interests have always been The Sims, listening to music, mostly international music, Geography, countries, languages and their cultures, I’ve never ever strayed away from them, but I’m heading on Wednesday so will keep everyone updated on how it goes.


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autisticelders
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13 Jan 2023, 8:33 am

Having somebody who knew you when you were a child is not necessary to obtain diagnosis. It can help the diagnosing professionals by providing confirmation of your own memories, but it is not strictly a "must have" or a rule in order to get diagnosis.
Your brother in law might be asked a few questions about behavior he has observed since he has known you.

For older adults, professionals often have no access to parents or long time associates. I am glad you found a way to go to the appointment and that you have somebody going with you. Keep us posted!


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13 Jan 2023, 1:48 pm

It might be worth seeing if they'd be interested in talking to your mother over the phone...if she's willing to talk to them on the phone.

I was 64 when I got my assessment. I took my bride with me. The psychologist gave us a few questions to ask my Dad and we did that...but I was one of four children and the time-period of interest was more than 50 years past so Dad didn't have much useful info to offer (and it was blurry).

I also took some things that gave insight into my long-past childhood:
<=>- copies of all my report cards and standardized test results
<=>- a journal my long-deceased Mom had kept for before my first birthday
<=>-+(it was the 1950s, I was her first child, she was 21-years old, it was a "thing")
And they might be interested in any records you have regarding when you were quite young.


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JonathanCampbell99
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18 Jan 2023, 6:31 pm

Update: Hello everyone, I’ve had my ADOS today and struggled with it so much, the clinical psychologist ended up diagnosing me with Autism and is it normal to feel like crap and just like I’ve been hit with a lorry? Just feels like that if I’m honest. I feel like a weight has been lifted off me because now I know why I’ve struggled all my life.


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18 Jan 2023, 9:29 pm

What did you have to do in your ADOS, and how did you struggle?



JonathanCampbell99
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19 Jan 2023, 7:09 am

IsabellaLinton wrote:
What did you have to do in your ADOS, and how did you struggle?

Using a storybook with no writing, I only said what I thought was happening, found it quite difficult, didn’t give too much detail, she put things up for me to play with when she was writing, I didn’t even know I was supposed to play with them, so I waited till she was finished writing her notes, I then struggled with making up my own story, wasn’t able to do that, the map was OK.


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19 Jan 2023, 4:13 pm

Congratulations!

And how you feel about the diagnosis is up to you. You'll find quite a few folk on WP (including me!) who were happy to get the diagnosis because it explained so much.

Also, remember the only right answer on the assessment is your answer. The goal is to understand you so you should just be cooperative and honest and act natural. The only prize is an accurate diagnosis.

I found the assessment kind of interesting and parts were sort of funny! I was 64 at the time and parts of the test seemed to be targeted for people who were 4. But I think I got the correct diagnosis—Autism Spectrum Disorder, Level 1 (Mild)—and it pleased me to finally understand so much of my life-experience.


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