Page 3 | AIBU to think that if you get to the point of an NHS ASD assessment that you probably do have some form of ASD?

Boystomenslowdanceatweddings · 31/12/2022 15:35

@donttellmehesalive please could you do a AMA? Your replies are really interesting and suggest what I think is probably correct. Out of interest, have the school ever got ASD vs ADHD wrong? My school are in disagreement about whether my DD has autism and ADHD or just autism. My belief is that she just has autism. They want to refer her but I'm undecided about whether to wait until we have a concrete autism dx first. The school are saying that, as the autism is pretty clear cut, we should crack on with the other referral but won't the autism assessor be able to spot ADHD traits if they are there?

Skiphopbump · 31/12/2022 15:48

I know a child who was assessed privately and didn’t meet the threshold hold for a diagnosis, a few months later she had an NHS assessment and was diagnosed.
The assessments aren’t conclusive and can be open to interpretation.

leithreas · 31/12/2022 15:52

Boystomenslowdanceatweddings · 31/12/2022 15:35

@donttellmehesalive please could you do a AMA? Your replies are really interesting and suggest what I think is probably correct. Out of interest, have the school ever got ASD vs ADHD wrong? My school are in disagreement about whether my DD has autism and ADHD or just autism. My belief is that she just has autism. They want to refer her but I'm undecided about whether to wait until we have a concrete autism dx first. The school are saying that, as the autism is pretty clear cut, we should crack on with the other referral but won't the autism assessor be able to spot ADHD traits if they are there?

Just a quick one on this. My ds was in a bit of a similar situation. All agreed that he had autism, school thought so, we thought so, he was diagnosed with autism. He is a teen now and started seeing CAHMs and the shrink asked if he was ever diagnosed with adhd. We were baffled, never occurred to us that he had it, his school were like ehh, we don't think so but we went along with the diagnostic process anyway and yeah he has ADHD (inattentive type) too. If waiting lists to get assessed are anything like they are here I would go ahead and get them referred. It doesn't do any harm to find out either way. My ds is the most sloth like creature known to man and I think that this is what threw us and his teachers when it was mentioned.

Original poster

Bepisicola · 31/12/2022 15:59

MyrrAgain · 31/12/2022 15:34

Who is this psychiatrist and what is their experience and expertise in the area? Do they even know enough to be making such a decision? ASD assessment is very specialist and sometimes requires an MDT depending on the situation.

There are also very subtle and specific differences for women and girls, which are often overlooked and why Women go without a diagnosis. They are also good at masking. Did this Psychiatrist have expertise in this?? If not I would certainly push against their decision. Also look at the Lorna Wing centre for specialist assessment for women.

I didn’t really have a say as it was on the NHS with the Adult Health LD Team in Hammersmith & Fulham. I don’t know if there was any particular focus on me being a woman.

I haven’t heard of the Lorna Wing Centre so I will look into that, thank you.

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SheWoreYellow · 31/12/2022 16:01

orbitalcrisis · 31/12/2022 15:34

@SheWoreYellow They didn't ask for any background at all? My GP asked why I thought I was autistic, took my family history of autism and asked me to fill in some questionnaires. I was then asked to fill in more by the diagnosticians and then was accepted on the list.

Yes, they do the questionnaire, but it is pretty subjective.

donttellmehesalive · 31/12/2022 16:02

Boystomenslowdanceatweddings · 31/12/2022 15:35

@donttellmehesalive please could you do a AMA? Your replies are really interesting and suggest what I think is probably correct. Out of interest, have the school ever got ASD vs ADHD wrong? My school are in disagreement about whether my DD has autism and ADHD or just autism. My belief is that she just has autism. They want to refer her but I'm undecided about whether to wait until we have a concrete autism dx first. The school are saying that, as the autism is pretty clear cut, we should crack on with the other referral but won't the autism assessor be able to spot ADHD traits if they are there?

I'm not brave enough for an AMA but yes we have been wrong about whether a pupil has ASC, ADHD or both. But in this area, you refer for both and they are assessed for both. It's just that sometimes we are surprised by the result.

I never argue with parents. If they believe that their child should be referred, I assume that the child is masking at school and refer. About 50% of those referrals result in a diagnosis.

Starlightstarbright1 · 31/12/2022 16:10

My ds has a dx for asd and Adhd..

The asd - i didn't ecpect a diagnosis as i believe its pda which does come under the umbrella.. the assoser saw the little things like he will give eye contact but looks through people.

Tbh though it is more the adhd dx that made the difference as he now medicates for it.

I do wonder now if i have asd but don't see it would change my life if I do or don't have it.

My question would be what would change with a diagnosis?

Original poster

Bepisicola · 31/12/2022 16:11

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.

Thank you for your insight. I was saving all along for a private assessment but got the NHS one after 3 years. I now don’t have the funds for a private one and started this thread to try to get some insight into whether it’s likely that a private one would contradict the NHS one.
I do have some ASD traits but since learning more about ADHD I think it is more likely to be this and so think I will get a private assessment for that. Plus it’s more within my budget. The GP referred me in the summer but I can’t wait another 3 years for this assessment. I need to get on top of my life.

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MangyInseam · 31/12/2022 16:17

You can have a hard time with certain things without it meaning you have ASD.

Many many people have issues like procrastination, social anxiety, having to mask a lo of the time, etc, and it's just part of being a normal human being in the world.

There is nothing to stop you from using some techniques that are recommended for autistic people to navigate some of these things, if you find them helpful.

SomethingOriginal2 · 31/12/2022 16:19

Bepisicola · 31/12/2022 15:32

Thank you so much for this insight.

I was a happy if somewhat feral child and my mental health problems began the day I went to secondary school because in retrospect I realise:

Went from a lax primary school (in terms of behaviour) where “playtime” was basically like Fight Club for kids. We were all absolutely feral and it would never happen today. Into a strict all girls school where even mouthing off at someone (not to speak of violence) was come down on like a ton of bricks. I found it hard to get my head around not settling things with my fists but I fell in line immediately because of point 2.
I was oblivious as a child to the fact I grew up on a notorious council estate (it’s been in a gang film). However at 11 something clicked and I became terrified of staying poor. I saw my only way out as doing well at school and focused 100% to the exclusion of everything else on that. I didn’t care about friendships in the typical way a teen girl would as I was just “passing through” on my way to better things.

I realise I put myself under extreme mental pressure to succeed, and I did. I developed many OCDs and tics. I have misophonia and prosopagnosia (face blindness) but these are things I’ve only been able to put a name to recently.

The wheels fell off at A Level but I’d built up enough momentum to do well in my exams, got into Oxford for a very demanding degree at one of the top colleges (i.e. not Lady Margaret Hall 😅) and then crashed and burned. After a couple of years I got myself together and went to another top uni but only just made it through. I have managed to get my life back on track a few times, had a demanding job for 10 years, but this time I don’t see a comeback. My brain is spent.

I wanted to be assessed to see if ASD could give an answer to many questions I have. But I know there’s no cure. I would be delighted if it was “just” ADHD as I could be medicated for it. But I don’t know how I’d feel about the bulk of my life being wasted and a struggle which could have been avoided if I was diagnosed sooner.

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Honestly I dont see anything that screams autism there, I'm sorry.

GoT1904 · 31/12/2022 16:21

Bepisicola · 31/12/2022 16:11

Thank you for your insight. I was saving all along for a private assessment but got the NHS one after 3 years. I now don’t have the funds for a private one and started this thread to try to get some insight into whether it’s likely that a private one would contradict the NHS one.
I do have some ASD traits but since learning more about ADHD I think it is more likely to be this and so think I will get a private assessment for that. Plus it’s more within my budget. The GP referred me in the summer but I can’t wait another 3 years for this assessment. I need to get on top of my life.

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NHS ADHD assessments have shortened in time scale in my area. There's a wait of 6-9 months. Could you speak to your GP and explain and get on the waiting list whilst also pursuing a private diagnosis? The issue with private is that you have to fund your medication and reviews until a set period, before the GP will take over prescribing your medicine.

I'm also waiting for an ASD/ADHD assessment. They're looking at them both, I believe. My son was assessed for both but was diagnosed ASD.

orbitalcrisis · 31/12/2022 16:22

@SheWoreYellow So you didn't )or couldn't) just ask for a referral, fill in some questionnaires while you wait and get an assessment which was the claim I was refuting.

It does autistic people a massive disservice when people make claims like that. It is a long and stressful road to even be accepted on the list, especially for women and girls, it is then often then 4/5 years before the actual assessment takes place. To expect adults with a social communication disorder and often poor executive function and poor mental health to go though all this just for recognition is a big ask, so when people pretend that the diagnosis is meaningless or an easy process that anyone could do is a real smack in the teeth.

RavenclawsPrincess · 31/12/2022 16:23

Boystomenslowdanceatweddings · 31/12/2022 15:26

@BungleandGeorge with respect, we all have internal struggles and a lot of us have breakdowns. My concern is that for everyone who is diagnosed as 'neurodiverse' the public awareness of the most profound aspects of the condition are lost. Those who have amazing jobs, successful careers, loving relationships who pay out for a private diagnosis have had the privilege of presenting as NT, the same as transwomen. My daughter with ASD doesn't have that luxury.
In the same way that autism used to say 'rain man' to people, who were then shocked that my daughter is three years behind her average age in school, the same people now think of their high flying neighbour who has recently been diagnosed.
They don't think of the executive functioning side which means my daughter has to be accompanied to the toilet to make sure she wipes, washes her hands, pulls her trousers up properly. They don't see the loneliness of her trying to navigate friendships when she doesn't get unspoken communication. They don't see the meltdowns over every day things when people are constantly telling you not to make a fuss or it's only shoes. They don't see the desperation of parents who have to fight for their child to attend mainstream school without being excluded.

Nobody is diagnosed as “neurodiverse”. We are all neurodiverse. If you have a neurodevelopmental condition you are neurodivergent.
Autism diagnosis isn’t a pie, someone being diagnosed who has fewer support needs than your kid doesn’t mean your kid gets a smaller slice of the autism pie. I’m sorry that it’s been such a struggle for your daughter - it sounds very hard - but other autists who present differently to her being diagnosed have not caused that, and especially if you are allistic you have no right to gatekeep or comment on who “deserves” a diagnosis or not.

Guess what, you also don’t see the struggles of your “high flying neighbour” behind closed doors either. You could easily be talking about me there - the outside world sees one version of what they think is a “thriving” autistic person, but what I’m like behind closed doors in my own home is what others don’t see.

SheWoreYellow · 31/12/2022 16:27

orbitalcrisis · 31/12/2022 16:22

@SheWoreYellow So you didn't )or couldn't) just ask for a referral, fill in some questionnaires while you wait and get an assessment which was the claim I was refuting.

It does autistic people a massive disservice when people make claims like that. It is a long and stressful road to even be accepted on the list, especially for women and girls, it is then often then 4/5 years before the actual assessment takes place. To expect adults with a social communication disorder and often poor executive function and poor mental health to go though all this just for recognition is a big ask, so when people pretend that the diagnosis is meaningless or an easy process that anyone could do is a real smack in the teeth.

I’m only sharing our family experience. I don’t really understand what you mean by your first sentence. Are you accusing me of lying?

SheWoreYellow · 31/12/2022 16:28

orbitalcrisis · 31/12/2022 16:22

@SheWoreYellow So you didn't )or couldn't) just ask for a referral, fill in some questionnaires while you wait and get an assessment which was the claim I was refuting.

It does autistic people a massive disservice when people make claims like that. It is a long and stressful road to even be accepted on the list, especially for women and girls, it is then often then 4/5 years before the actual assessment takes place. To expect adults with a social communication disorder and often poor executive function and poor mental health to go though all this just for recognition is a big ask, so when people pretend that the diagnosis is meaningless or an easy process that anyone could do is a real smack in the teeth.

And to add, I’m not saying diagnosis is easy to come by, just that your experience of the GP referral process isn’t everyone’s.

Original poster

Bepisicola · 31/12/2022 16:30

MangyInseam · 31/12/2022 16:17

You can have a hard time with certain things without it meaning you have ASD.

Many many people have issues like procrastination, social anxiety, having to mask a lo of the time, etc, and it's just part of being a normal human being in the world.

There is nothing to stop you from using some techniques that are recommended for autistic people to navigate some of these things, if you find them helpful.

I agree and I have been recommended many, many different coping strategies for all sorts of issues. None have helped yet.

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Original poster

Bepisicola · 31/12/2022 16:37

GoT1904 · 31/12/2022 16:21

NHS ADHD assessments have shortened in time scale in my area. There's a wait of 6-9 months. Could you speak to your GP and explain and get on the waiting list whilst also pursuing a private diagnosis? The issue with private is that you have to fund your medication and reviews until a set period, before the GP will take over prescribing your medicine.

I'm also waiting for an ASD/ADHD assessment. They're looking at them both, I believe. My son was assessed for both but was diagnosed ASD.

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I hope you get your assessment soon.

My GP referred me in the summer and said that I would hear within 2 weeks from the service with how long the wait will be. I haven’t heard from them yet and I don’t have the wherewithal to follow up.

I am worried about having to fund the reviews and medication privately before the GP takes over because I am only on maternity allowance.

I am going to do my best this week to follow up, but I find it overwhelming and I’m scared they’ll tell me it’s years away, so I put it off.

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yoshiblue · 31/12/2022 16:37

My DH assesses autism as a significant part of his job. The full assessment is lengthy and as long as that process has been followed properly, yes you may have not met the threshold for diagnosis. If you feel uncertain if/what assessment process has been followed you could challenge it.

I have just been privately assessed and diagnosed with ADHD. Wait was only a few weeks and spent a good 2+ hours going through my developmental/psychiatry history, as well as how I am now. Plus completed a QB test that showed a very high correlation to ADHD. It was £500 very well spent and would encourage you to nudge yourself to do it. I know I struggled to book the appointment for a while!

Original poster

Bepisicola · 31/12/2022 16:46

yoshiblue · 31/12/2022 16:37

My DH assesses autism as a significant part of his job. The full assessment is lengthy and as long as that process has been followed properly, yes you may have not met the threshold for diagnosis. If you feel uncertain if/what assessment process has been followed you could challenge it.

I have just been privately assessed and diagnosed with ADHD. Wait was only a few weeks and spent a good 2+ hours going through my developmental/psychiatry history, as well as how I am now. Plus completed a QB test that showed a very high correlation to ADHD. It was £500 very well spent and would encourage you to nudge yourself to do it. I know I struggled to book the appointment for a while!

Thank you for sharing your experience.

I thought it was around £300 so £500 worries me a bit but I need to make it happen.

Will you be starting medication? Or perhaps you have and if so do you notice a difference? I’m not expecting a magic bullet but I am a little hopeful. I also worry that the Sertraline I’m on isn’t helping as I recently read it can have an inhibitory effect on dopamine. I would say my (suspected) ADHD has definitely worsened the longer I’ve been on Sertraline.

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LimePickles · 31/12/2022 17:01

I agree with @Punxsutawney that you would know if you’d done the ADOS OP.

My daughter wouldn’t have been diagnosed without it. She masks well and can appear to be very socially confident, school said “she is fine when she is here” (she wasn’t fine at all, but that’s another story!) I thought this is what would happen during the assessment and that the assessor wouldn’t see through the masking.

However, I listened in the other room and as I listened on to her doing the tasks and answering the questions, that was the first time I actually thought “Oh she IS autistic”! as I’d been in two minds in the weeks leading up to her assessment.

Obviously I didn’t know exactly how it was being scored, but I could hear enough to convince me. I was surprised at her responses and I actually noticed some things I hadn’t before, about her conversation skills. It was skilfully done.

The clinician’s own conclusion was that she didn’t have any doubt - it still went to panel for feedback from other professionals though, plus my detailed questionnaire, plus school information plus many other reports we already had.

To the posters who seem to think it’s an “easy” diagnosis to get, it really isn’t. I know of a few parents who have been given “wait and see and come back in a few years” even when paying a lot of money privately, it isn’t a diagnosis that is just handed out.

ADHD is an even harder one for children who mask in school, as the behaviours have to be seen in two settings

Boulshired · 31/12/2022 17:09

DS2 was diagnosed when he was under 2, very clear and obvious traits, it was at one appointment with just me and him the paediatrician (highly regarded in the field of ASD) informed that I was in her opinion on the spectrum. I’m not that bothered so didn’t pursue any further but it started the questioning of whether DD was. She has a diagnosis of both ASD and ADHD but up until her brother and myself I just saw her as my normal, quiet, introverted, sensitive etc. If she had been assessed as an adult without the knowledge I now have I would’ve been detrimental to her getting a diagnosis as I didn’t see the alarm bells that I can now see with both of us.

Original poster

Bepisicola · 31/12/2022 17:30

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.

Very true and I think it works like this for physical ailments too. There’s no one to bring a range of various symptoms into one diagnosis. GPs have enough on their plates.

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Original poster

Bepisicola · 31/12/2022 17:43

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.

Thank you for this.

We had a final communication 6 months after my assessment started. I can’t remember if it was a zoom call or just a regular telephone call. She said I had traits but not enough to make a diagnosis. She thought it was GAD. I disagreed because I don’t have anxiety. There’ve been times in my life when I’ve had anxiety but they were purely situational and not abstract.

As I was skeptical about the diagnosis she said it wasn’t just down to her but that it was discussed with a panel (of other psychs, I guess). However, she was the only one who met me in person, once. I wanted a second opinion but didn’t have the confidence to ask for one.

She said she’d send me the write up of the report but never did and I have had it on my agenda to contact her about it for the last year and a half because I really need to get to the bottom of things as I can’t go on as I am.

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FatGirlSwim · 31/12/2022 17:44

donttellmehesalive · 31/12/2022 15:21

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

All of the referrals I have made have resulted in a diagnosis.

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?

FatGirlSwim · 31/12/2022 17:46

Really?! No op. Anyone can ask for a referral if they say they think they might have autism and then you do a few questionnaires during the wait. I could do that for myself right now.

This isn’t true. My dc was referred by school three times before they were accepted onto the waiting list for assessment. Lots of evidence was required. Your referral isn’t going to be accepted without it.