ASD waiting list

Hi Lonieke,

I've been on the NHS waiting list since September 2022. I chased up my GP surgery after about a year, they couldn't tell me much but they did confirm that my GP had sent the referral letter and gave me the date, so they had that on record. I'm waiting to be assessed by South London and Maudsley NHS Trust, and had to fill out a questionnaire (over a year ago) to avoid being booted off the waiting list. They said I just needed to write a couple of paragraphs to explain why I think I may have an Autism Spectrum Condition, but I ended up writing about 3 pages - hey, they're asking me about one of my specialist subjects, I'm going to want to go into detail! I've not had much else in way of contact from the NHS Trust, just a couple of unsolicited emails about their mental health Recovery College programmes. I think the waiting lists can sometimes be as long as five years for some trusts. I'm not very good at navigating my way through bureaucratic processes, so the desire to chase them up isn't very strong for me at all. I know the idea of such a long wait can cause some people a great deal of stress and anxiety, and I've found that swings in intensity from time-to-time.

What I do find helpful is that when I've spoken to my family and the few friends I have, they have taken me seriously and listened to me.

i have my next week and its been over three years

Alien0n3arth said:

many people mention going through "right to chose", maybe you can also try if it's available in your country

Unfortunately It isn't available in Scotland the last I heard.

Te Highlands and Islands region os Scotland is very sparsely populated and alas are poorly served by the NHS non-core services such as is needed here so a long wait and probably a long journey lie ahead.

Hi, I don't find your post long at all. It came to my mind- many people mention going through "right to chose", maybe you can also try if it's available in your country. I promised myself, even if I get the "no autism" diagnosis,  I will still be here in this forum, especially if the diagnosticians don't tell me what is it instead. As lain suggested,  it's a good idea to take some tests, like AQ50, RAADS,  aspie quiz, there is also "read mind in the eyes" - to check how good or poor are you at recognising someone's emotions in their eyes. 

Lonieke said:

I keep reading the DSM-5 thinking: yeah, no, I don't fit these the way they are written down here.

The thing with autism being a spectrum condition is that you are going to have some of the traits and these will be at various intensities so no two of us are the same.

We are also frequently really good as "masking" our autistic behaviour as it gets us into trouble and we learned since childhood that it is safest to blend in, so you probably camouflage and don't really realise you are doing it so will have self doubt about who the "real" you is.

Lonieke said:

I've been on a waiting list for ASD assessment since February 2024. I know it can take a reaaally long time, but this seems too long

If I were in your shoes I would not wait for the assessment - the lists tend to be many years long (I'm hearing of 4-5 years in some parts of the country). I would self diagnose initially to see if I am likely to be autistic just to put my mind at rest.

The easiest way to do this is to use your favourite search engine to look for "free online autism test" and take one or two of these to see if you score above the threshold to be classed as austistic.

I would recommend making a printout of your results and also to list which of the autistic traits you recognise strongly in yourself. The list can be found here: https://thespectrum.org.au/autism-diagnosis/checklist-adults/

Try to note when in life these have been an issue for you and how they presented. 

This will be really helpful to present in the assessment when it comes as I read that many autists either mask in the sessions or shut down and can't remember of converse well under the perceived pressure.

Assuming you reach the criteria then this is a great way of keeping the discussions focussed on the relevant facts and will ensure that they take you seriously.

In the off chance that you don't reach the criteria then remember that autism as a diagnosis is a label for disability so you can be on the spectrum and affected by it, just not badly enough to be considered disabled. It doesn't mean you are not autistic, just not disabled enough for the label.

Lonieke said:

I'm sorry for such a long post!

There is a lot to take in with autism so don't be afraid to be as wordy as you need to be. We are here to listed (if you want to rant) or to help if you ask.