AIBU to think that if you get to the point of an NHS ASD assessment that you probably do have some form of ASD?

[Bepisicola]

AIBU to think that if you get to the point of an NHS ASD assessment that you probably do have some form of ASD?

I know that managing to get a referral and then assessment for ASD on the NHS is about as likely as scoring a private audience with the almighty, therefore I am given to believe that if you’re ‘bad’ enough to get to this point, then you probably will get some sort of diagnosis?

This is my situation and the psychiatrist has said she does not think I have ASD. I disagree and am wondering where to turn to next?

OP… mumsnet isn’t always terribly understanding of neurodivergence. You’re not going to find your answers here. The psychiatrist may or may not have been wrong, it’s not an exact science.

A friend was recently diagnosed. He was asked a question along the lines of how invested he was in getting a diagnosis. The assessors did say that they get people who are very invested in getting a diagnosis and are quite upset when they don't.

@Bepisicola I'm currently having a think about what to do next. I generally cope ok in day to day life but also suffer from chronic pain. The psychiatrist thinks it could all be linked, so I'm as much interested in trying medication that may help my hyperactive brain, and my pain levels in turn!

Re: costs, unfortunately £500 for assessment was extremely reasonable, I've seen much higher costs, and paid £700 for my DS's ADHD assessment. The psychiatrists set their own rates, but both operate out of The Priory. Please be aware that private costs do tend to build up as you have to pay private medication rates and check ups before you can be handed over to a GP for shared care agreement. Happy to share more exact figures if you want to DM me, I know I struggled to get an idea of the true full costs when we were looking at my sons' situation.

Thank you. I was feeling at a dead end and actually many posters have given me very helpful info and I am feeling motivated to get to the bottom of things. I’m grateful to anyone who has taken the time to respond with their views and experiences.

I have emailed the psych for the report this afternoon but it’s bounced back as unrecognised so she might not be working for that service anymore, it’s been almost 2 years since the initial assessment. Means I have to phone once things open up and see if I can get it that way. I absolutely hate getting on the phone so am dreading it.

It upsets me that there is so much gatekeeping among many with developmental disorders or parents of those with developmental disorders. Someone getting a diagnosis does not diminish the greater struggles that you may have. However, I believe those people who have real difficulties behind closed doors can present as successful in life.

I don't know what would be best OP but I wonder if it would be worth using some of your funds to get support from private therapists who specialise in working with neurodiversity. Areas of support you might access include improving self regulation, finding greater sources of support, finding strategies to deal with procrastination, organisation etc.

Thank you very much for your suggestions. I’ve had extensive CBT for procrastination issues, etc. to no avail. If anything I am worse now.

I think I’ve read every book that was ever written on overcoming procrastination. I get things done, just not the things I need to do, no matter how serious. I know what I need to do and how to do it, I just can’t, mentally or physically.

I’m also currently seeing a psychologist (not CBT) but I am just feeling worse about myself. I can’t afford private therapy at the moment.

@Bepisicola you might be quicker going via the "access my medical records" route.

Google NHS trust and accessing medical records - it's usually quite quick. The report should be in them.

WRT your question these assessments are quite comprehensive and involve several professionals. They are designed to be robust but there will always be situations where mistakes are made.

However, it's important that autism is a spectrum and that there will be people who have a lot of traits but who don't quite have enough to hit diagnostic threshold - doesn't mean some things aren't hard though.

Sounds like you had quite a lot of childhood adversity. Is there not an association with that and difficulties in adult life?

Amazing advice, thank you so much. I will do try this route 🙏

Yes there was childhood adversity, but I didn’t see it until I was about 11 and it’s like my brain switched on and I hyper focused on academic success as a means to escaping poverty.

I actually think my possible neurodivergence is a big factor in why I’ve had some (limited, and considering my early life) success and why I didn’t end up in a truly awful situation. In many ways I was impervious to peer pressure and had I been a “normal” kid, I think I may have turned out quite differently.

However, the way things are now, I am slipping back towards the adversity of my childhood and I am worried I’ll end up full circle. I just don’t have any fight left.

May be helpful for you to look at the Bradford scale on attachment as very similar characteristics as ASD.
Any diagnosis is made on the criteria set by WHO therefore you may have some characteristics but not enough to meet diagnostic criteria.
In my professional opinion (diagnostic clinician) too many people assuming they have ASD based on an internet search.

Thank you for these suggestions.

ASD was suggested to me by a psychologist I saw for CBT after a breakdown, not an internet search. She then made a referral after she had me do a questionnaire.

"Could that be because a high proportion have been masking at school and so the evidence supplied by the school to support the referral is weak?"

I don't think so. It's a rigorous process and they understand that some children are able to mask very convincingly. A pp said that she was on an adjoining room and overheard the questioning, which was skilful and was designed to expose any masking. I found that very interesting, although I have never attended an assessment myself.

Sorry if I’m being stupid but I’ve googled “Bradford scale on attachment” and can only find information relating to employee absence?

Chase up the ADHD referral too OP. My son was referred in the summer and has his assessment this coming week, but I did nudge the GP a couple of weeks ago, who I think must have nudged the ADHD team. This is adult services btw - I just help him with life admin etc.
He was assessed with autistic traits when he was 12, but not enough for a full diagnosis.

To be honest, OP, I don't think you specifically are going to be diagnosed with ADHD on the NHS.

I saw a female psychiatrist this spring and summer who felt pretty confident I had it and recommended stimulants. She left, then the male psychiatrist who replaced her had me do the assessments twice. While he thinks I have a lot of symptoms, since I had no bad reports from primary school he recommended bipolar instead, so I'm going to start a low dose of lithium shortly.

I'm very high functioning at work (get 100% on all work assessments and external exams), but bad with time management, interrupt people, talk too quickly, very messy, bad short term memory, bad insomnia in stretches etc.

I think I’ve read every book that was ever written on overcoming procrastination. I get things done, just not the things I need to do, no matter how serious. I know what I need to do and how to do it, I just can’t, mentally or physically.

I don't know if we need a different word for some forms of procrastination. When I think of some people who are affected by it, it's people who literally cannot take action on something for decades. No matter how serious the impact on their life, finances, people around them. Even when they intellectually grasp the necessity for action, they just can't take the next step.

DBT seems to be much more successful for autistic people than CBT. Autism Inclusivity is a good FB page and you can find out more.

@Puffin87 i am really concerned that they would suggest bipolar instead of adhd and then move to Lithium. I know many females diagnosed with adhd as an adult. I am def sure that I have adhd and my dd10 is in the process of diagnosis. Dh and my family has lots of schizophrenia and autism amongst our 9 siblings and I really think that undiagnosed autistic and adhd is the actual problem.

All the things you mention there scream adhd, not bipolar. primary schools are not good at this, they will judge you on your strength (intelligence) rather than your weaknesses (time keeping, impulse control). If it is an NHS diagnosis, I would look for a private one from someone more expert.

@Puffin87 - did he discuss lamotrigine with you as an alternative to lithium? If not, ask him why not.

Are you able to get another opinion on his diagnosis ? Especially since his opinion contradicts the one of his predecessor.

Thank you, I spoke to a GP (I’ve never managed to have the same one twice) about an adjacent issue but she didn’t offer to follow up. She gave me the number to call the service myself, so I need to get organised to do that. It gives me the fear though. I hope they can do something to help your son.

I'm not sure what condition you believe you have OP as you speak of both ASD and ADHD interchangeably as if they are the same condition. They are not and are distinctly different although some people do have both and other conditions too.

Really not trying to be aggravating to you as they might be 'stress-typos', etc.; but it would be helpful to know.

That’s me. I’ve needed to get a heating system installed 6 years ago, yet here I am, with a baby - and no heating system. I just can’t do it. Same with the leasehold extension that was due 6 years ago. Can’t do it and my flat is losing value every day. That’s only the tip of the iceberg.

Sorry - no I know they’re completely separate. I was initially suspected to have ASD (suggested by a psychologist I was seeing for CBT), assessed for it by a different person who said “no”. Still waiting for the report 1.5 years later and have kept putting off chasing up.

6 months ago I came across info on ADHD - here on mumsnet! I naively thought it was something only naughty little boys had - tbh I didn’t even believe it was “a thing”.

Unfortunately though, every piece of info I’ve read about it makes me think “uh oh”. Saw GP in the summer who did a quick test and referred me. Now waiting for ADHD assessment. Not sure if I should go private as I have just about enough to pay for the assessment, but not enough to pay for private treatment.

I may have it or not. If I do, at least maybe medication will help. But it will probably send me into a spiral of thinking what life could have been if I’d been more self aware earlier.

PTSD, anxiety disorder and attachment trauma can also present with a lot of the same results/effects in children and adults, so no, it isn't necessarily a given.

Thank you, I’ve never heard of that. I’ll look into it.

Thanks for clarifying Bepiscola much appreciated. I really don't have anything proper to suggest, except of course that you try and focus on stating ADHD as your condition and not ASD.

Having said that, maintaining focus is very difficult for people with ADHD!
Best of Luck OP.