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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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

106 replies

Bepisicola · 31/12/2022 13:59

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 posts:
BackBeatTheWord · 31/12/2022 14:03

The people who get to the point of having an assessment are obviously far more likely to have ASD than a random person in the general population. They're also probably suffering from symptoms which make their life difficult to have gone to the trouble of getting their assessment. NO I don't think in all cases they have ASD though. There are other issues which can present in a superficially similiar way which is why it takes a highly trained professional to actually carry out the assessment (rather than just the GP or self diagnosis).

If you genuinely feel you weren't properly assessed and it's important to you to get a diagnosis could you save up for a private assessment? The NHS services are highly stretched and a private appointment tends to be longer and more in depth. They could possibly also investigate other explanations for you.

loafintheoven · 31/12/2022 14:04

That's a really difficult question to answer. What would you do differently if you got a diagnosis? Would it materially change anything for you? Are you wondering whether to stay on the waiting list? And what does the psychiatrist think? I don't think it's an unreasonable assumption, but I certainly wouldn't say you're guaranteed a diagnosis.

entropynow · 31/12/2022 14:04

Bepisicola · 31/12/2022 13:59

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?

A diagnosis is based on criteria, if you do not meet them, you don't get one.
That is not the same as saying "100% neurotypical, carry on"
It's possible to have autistic traits which may respond to certain approaches and life hacks.
It really depends what the diagnosis would be for. If to help signpost you to help and support, as an adult you can find these yourself. If for other reasons, eg disability support, could be more tricky. But that depends what the presenting issues are.

PermanentTemporary · 31/12/2022 14:09

Possibly. I would agree that getting a diagnosis of ASD is not the same as having it.

I would say the NHS paediatric service in my county is hugely different for different ages. The preschool clinic is excellent AFAIK. Then so far I know two children really well who only got into the service at primary school age and were then reviewed at secondary school age. Both were told they were not autistic by the primary school age clinic and were then diagnosed around year 10. The parents of those children say they aren't the only ones this happened to.

The thing is that both of these children were very straightforwardly autistic - really not subtle or difficult to diagnose. But the specialist clinics are so thinly spread- you could be talking one individual who is a clinical lead for a county whose word carries huge weight in the clinic, and they may have an outlier view of autism.

I hope you can get a second opinion if you need one.

helloisitmeyourelookingfor · 31/12/2022 14:10

I'm a senco and do quite a few referrals

I'd say about a third that go all the way to panel are diagnosed, a third are 'watch and wait' where they are reviewed 2 years later (mainly girls) and a third are recognised as having traits but do not meet the diagnostic criteria

But you are right, you need significant traits to get to assessment

Boulshired · 31/12/2022 14:14

As adults there are difficulties with the diagnosis process in that some other causes can lead to trait like behaviour but that are not part of ASD as they are not lifelong. There are links with Anorexia and ASD, but anorexia also can lead to ASD like traits. Differentiating the two from someone who was not diagnosed with ASD as a child is more difficult. Other mental health conditions and other conditions such as ADHD make the scoring complicated.

Boystomenslowdanceatweddings · 31/12/2022 14:14

@Bepisicola could your traits be explained by anything else?

IndieK1d · 31/12/2022 14:14

Why does your psychiatrist think you don't have ASD?

DarkKarmaIlama · 31/12/2022 14:15

It doesn’t mean you have ASD. It just means your persistent for some sort of diagnosis.

donttellmehesalive · 31/12/2022 14:18

I'm a teacher and regularly refer pupils for assessment. Sometimes this is initiated by me and sometimes it is initiated by parents. Of the referrals instigated by parents, about half result in a diagnosis.

bellac11 · 31/12/2022 14:19

If you strongly believe you have ASD then its likely you are presenting in a way to fulfill your belief.

Whatmarbles · 31/12/2022 14:24

As I understand it, the tests are accurate.

Did you want a diagnosis of ASD specifically, or would you be happy with a diagnosis of anything iyswim?

Original poster
Bepisicola · 31/12/2022 14:28

Boystomenslowdanceatweddings · 31/12/2022 14:14

@Bepisicola could your traits be explained by anything else?

My ASD assessment was in 2021 and about 6 months ago I started learning more about ADHD in adults. It definitely rings a bell. Many bells.

However, I am now wondering why the psychiatrist didn’t pick up on those (I have some glaring traits and my whole life has ground to a halt due to the difficulties I have).

This now makes me question her reliability/qualification to make an assessment given her ignorance of ADHD in adults. I know my assessment had to go through a panel of psychs, but of course she would have presented the info with her take/spin on it.

There are other reasons why I think her assessment was incorrect too.

OP posts:
DarkKarmaIlama · 31/12/2022 14:31

@Bepisicola

Bit harsh to call the psychiatrist ignorant when ADHD is a neurodevelopmental disorder and their clinical specialty is mental Illness. I do hope your diagnosis will be worth it for you. It’s often an anti climax for many and not the solution/fix all you may think.

Original poster
Bepisicola · 31/12/2022 14:31

IndieK1d · 31/12/2022 14:14

Why does your psychiatrist think you don't have ASD?

She said I don’t have enough traits. But I was referred by a psychologist I was seeing for another issue after they had me complete a written assessment and scored very highly. Anything I’ve read since about ASD strikes a chord. As far as I’m concerned ASD or whatever else it might be has marred every aspect of my life.

OP posts:
Original poster
Bepisicola · 31/12/2022 14:33

Whatmarbles · 31/12/2022 14:24

As I understand it, the tests are accurate.

Did you want a diagnosis of ASD specifically, or would you be happy with a diagnosis of anything iyswim?

Anything at all. I just want to understand what is wrong with me. It would help me understand myself better and not feel like I am completely useless.

OP posts:
DarkKarmaIlama · 31/12/2022 14:33

@Bepisicola

Also none of it is an exact science. You can’t just fit people into diagnostic boxes so of course there are going to be professionals who may agree you have ADHD or might just think there’s something else going on. I am
sure we could all get diagnosed with something if we persisted hard enough.

BungleandGeorge · 31/12/2022 14:33

donttellmehesalive · 31/12/2022 14:18

I'm a teacher and regularly refer pupils for assessment. Sometimes this is initiated by me and sometimes it is initiated by parents. Of the referrals instigated by parents, about half result in a diagnosis.

Out of interest is that higher or lower than those instigated by school?

orbitalcrisis · 31/12/2022 14:33

Unfortunately many 'experts' are still unfamiliar with female presentation. What did the other assessor think? You only mention the psychiatrist, two diagnosticians need to be involved if the assessment is to be NICE compliant.

I have heard a lot of people have more success if they see someone with more experience with autistic women and girls like at Lorna Wing. If it helps, an ADHD diagnosis is much cheaper so getting referred for one may be much easier.

LimePickles · 31/12/2022 14:36

Did you do the ADOS assessment? It can’t be just the psychiatrist’s opinion after having a chat with you, she must have some evidence to back it up with to have take it to panel

There is a lot of crossover with ADHD and it’s quite possible that she just didn’t consider that as it isn’t what she was looking for (in a sensible world that would be flagged up anyway but these things don’t seem to operate in a sensible fashion at times)

LimePickles · 31/12/2022 14:36

DarkKarmaIlama · 31/12/2022 14:33

@Bepisicola

Also none of it is an exact science. You can’t just fit people into diagnostic boxes so of course there are going to be professionals who may agree you have ADHD or might just think there’s something else going on. I am
sure we could all get diagnosed with something if we persisted hard enough.

That is a really silly thing to say.

CoffeeBoy · 31/12/2022 14:39

Could you pay for a private adhd assessment

Ballymaloo · 31/12/2022 14:39

You obviously must have some difficulties but not necessarily autism. The way the NHS works is ridiculous though - if you’re referred for autism they will only assess you for autism. If you want to be assessed for ADHD then you need a separate referral for ADHD.

Logically I’d expect a patient to be referred to a psychiatrist who assesses for any and all conditions, and tells you what’s causing your problems. But that’s not how it works. You need a separate referral for every condition you’re suspected of having. The person who does the autism assessment won’t/can’t tell you if you have ADHD. They will just say autism yes or no.

usernamenotaccepted · 31/12/2022 14:41

After your ASD assessment you should have received a full report which would include the specific assessment frameworks used to assess you as an adult. It should also have drawn those together in a formulation and clinical view. What did the report say because that's where you'll find the answers to your query. Not sure what you mean by the psychiatrist reporting to a panel? The assessment is so thorough and ought to have been part of a broader picture over your entire life with contributions from people who have known you that long or who know you will enough to provide information. 3 clinicians were involved in my assessment up to my actual diagnostic interview.

DarkKarmaIlama · 31/12/2022 14:41

@LimePickles

It isn’t silly at all. Many professionals agree with me.