u/Stormiekitty

Hi all, got a question about what to do.

I was diagnosed with Autism just over a week ago after a very long waiting list with the NHS. I am “happy” I am diagnosed because I feel seen finally.

But, I feel upset, they used the DSM-V criteria and point 3 of it is about it being present in childhood.

At the time of forms being submitted I did not have a childhood informant as I do not have a good relationship with my parents. Therefore they could not include point 3 in DSM as a valid point.

I have spoken to one of my parents as we have made up (for now I suppose). She could definitely provide actual insight to the fact these behaviours are long standing.

I feel upset because I’m missing a point I definitely should have, even if I understand the fact they can’t check it off without a childhood informant. I feel “less autistic” than others who have the childhood point checked if that makes sense.

My questions are, would you personally ask them to consider the childhood point if I can provide filled in forms with the childhood informant?
Or am I blowing this out of proportion and it really doesn’t matter?
Would they somehow magically change my diagnosis from Autism to non Autistic if I included it? I’m worried about them thinking I’m not actually Autistic all of a sudden.
Would I need to go through another assessment or would it just be added to the report?

Thank you.

Hi all, thought I’d share my story and ask a few bits. Behold, a long post of clear thoughts for the first time in 20 years:

Firstly, my timeline:
8th June: Got fed up with my 7 year long ADHD waiting list through old NHS referral, and messaged my GP asking for an appointment. They told me to pick my provider and provide a document on what I thought was wrong, etc.

9th - document provided, sent back to GP (who were so unclear and not super helpful with their wording. They didn’t even offer me an appointment just said fill in a form and get on with it). After a call where I said I had nobody to send it to, they gave me an email and it was forwarded up the chain.

9-10th (unclear) - Document and referral sent to Harrow Health.

12th June, 3am - Harrow Health portal details sent over. I could not sleep!!

12th June - all of own documents filled out, parental one filled out.

13th - Adult informant filled out. Here I noticed a glitch, once all questionnaires were filled out my portal just went blank. I worried but found similar posts on here which put my mind at ease.

15th June 8:30am - link for appointment sent, appointment booked for Saturday 20th. Had dates as early as the 17th but I had an upcoming autism assessment I had to take time off work for and I thought they may have smited me if I took another (subtle foreshadowing).

16 and 17th they sent reminders to book and a reminder of upcoming appointment.

19th - I miss a call from them, and immediately know. I tried to call back for 30 minutes but my job is taking calls and any longer than that I would have been in trouble so had to put the phone down. I noticed they didn’t have a number in queue, they just said I am in a queue.
They called back within an hour or two, said the assessor was sick, they need to rearrange. I (undiagnosed at the time) have autism and it felt like a shatter to me, but nothing can be done. They tried to get me in for the 22nd but it was the day my autism assessment was happening, so 23rd it is.

*unrelated to ADHD, 22nd, had autism assessment via NHS after being on waiting list for years. Got results later that week*

23rd 9am - had a lovely assessment with a fantastic woman. She was so understanding and nice. She considered the fact I had an autism assessment and was awaiting the results. She considered how AuDHD has conflicting and almost self managing/balancing traits. She was so understanding of childhood issues and how I struggled in and out of school, and how it affects me now, my mental health and impulsivity struggles. It was also discussed my trauma and how my entire family suffers clearly but they are of older generation or drug users, and so there are limited amounts of diagnosis in the family.

The appointment lasted an hour. She explained it’s definitely ADHD, and as she used to do ADHD and Autism assessments, she would be very surprised if I didn’t get the autism diagnosis (2 days later I did). She didn’t say if it was combined ADHD or impulsive or hyperactive, I want that result admittedly. She said she was afraid to put me on medication, as my mental health is poor, and a lot of symptoms described seem like AuDHD burnout. I agree with her but asked to be placed on them anyway - agreeing I will stop if it worsens me. She agreed - she also mentioned that as it’s pretty clear with having autism, the ADHD will be “squished” with the meds and the autism will prevail lol. I have experienced that a bit, but it’s fine. My autism puts me more in a rigid routine so I prefer it. But maybe makes me a bit more stubborn.

I got given 18mg modified release for 2 weeks and 36mg for another 2. I’m in my first week of 18mg. So far I’m not seeing changes distinctively clear to the meds, I have a bit of difficulty eating and sleeping, but my house has been 34 degrees in this heatwave (we had a wasp nest in our windows so couldn’t open any! I got that sorted though). I notice a bit more productivity and less of a “ah, a block.. let’s just sit and not do anything to get around it”. My work is better, I am documenting things in a better style. I still struggle but it is a starting dose.

I also got given a link immediately after to book my next appointment.

My questions to you guys are:

- I’ve not received my ADHD report yet. How long does it usually take to receive one? My work is aware of my diagnosis’s but need the report for reasonable adjustments. I haven’t emailed them yet, thinking of waiting for 2 weeks then emailing or asking at my next appointment.

- Do people generally stay on ADHD meds forever? I read some online from a few sources that people tend to stop 2-5 years in. But even the brief clarity from this low dose is, eye opening? I don’t necessarily want to be taken off them :(

- I got prescribed just the name of the medication, but not the brand. My pharmacist gave me 2 different brands. Could this come with challenges? Should I flat out ask at my next appointment to be put on a specific name and not just the components of the meds?

- My GP straight off the bat refused shared care, and I know HH changed their policies to continue prescribing even if the GPs decline. Is the medication at the same price? Can you confirm if they try to take you off it after 2 years?

- I also want to change GP as they are abysmal to be honest, and I moved out far from them, so while I’m out of area for them right now I want something better and closer. How to go about notifying HH? Do they need to know or do anything?

- What are some peoples reasonable adjustments at work?

- I am a university student, are there any accommodations you think I could request?

- How did your university life change after being put on meds, how soon were the effects?

If you have any further advice, or think I haven’t asked an important question please pop your thoughts below. I appreciate it all, this is a challenging time for me as being diagnosed with it all is overwhelming but so full of relief.

Thankksss!!!!