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?

Yes!

I have a job where often children have been assessed for autism or adhd and have not received a diagnosis. The wheels fall off at secondary age and they are back at CAMHS and do get a diagnosis. For ADHD, it is usually schools that frustrate the process because they find parenting the fault and for autism I think it relies on the skill of the clinician (eg, familiar with female presentation). I have three autistic children and specialists (incl school) denies autism, but they all did have it and when in front of the right people all devices a diagnosis.

Background information is as important as your own opinion. What do your parents or those who knew when you were a child say about your presentation as a child? What do your school reports say? How was your sleep? Attention? How did you take losing at games? Did you have lots of friends? How did you play? What did you do when you didn't know someone or how were your reactions when something didn't go to plan.
What I mean is that these are life long conditions so if there was no evidence as a child it is less likely, though not impossible, that you have asd or autism as an adult. If your parents are around, get the DIVA diagnostic questions. Don't ask your parents leading questions, send them a questionnaire of things without any context. Let them answer honestly.

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.

Its perfectly possible for someone to have traits, but not have enough or not have them to a clinically severe enough extent, to warrant diagnosis.

Having found life difficult doesn't mean you have something wrong with you.

Life is bloody hard. We live in a time where imho the odds are stacked against us, wealth disparity is everywhere, social media makes us insecure, we lack some of the community structures and supports people had in the past. I think many of us actually aren't suited to the society we find ourselves in but might have been fine a few hundred years ago.

It's not a popular opinion now but if you have 'thrived' for most of your life without a diagnosis and support then I do think it is statistically quite likely that you are NT.
Yes those with ASD can have good social lives, professional careers, families and be awesome parents but the ones I know have a diagnosis and pay considerable attention to making sure they have things in place in order to achieve this. I don't know anyone who hasn't struggled for years in one or more aspect prior to getting assessed. And those struggles don't always mean you have autism or ADHD.

Thank you so much for your response. I’ve had nearly 40 years of masking and I was thinking because I had a similar cultural background to the assessor (non English) we got on quite well and I probably came across more “normal” to her - if that makes sense?

The first assessor was a psychologist I was seeing for CBT after a mental breakdown. She thought I had traits. I had the ASD assessment with a psychiatrist 3 years later. Our interactions were limited as it was during lockdown. I didn’t see a second psych but she said she put my case to a panel. I did feel from the very beginning that she didn’t think I have ASD. I think if I was assessed as a child or teen I would have been diagnosed but I have been through the wars to come off as ‘normal’.

I am going to apply for a private ADHD assessment but am finding it very difficult to make myself do it. I always make an excuse or simply forget whenever I would have a window of time to look into it.

A friend of mine got diagnosed with both ASD and ADHD as an adult! I was a little surprised by the ASD but not the ADHD but of course I'm no expert (she is a social butterfly!). I'm not sure what route she took but it is possible to get diagnosed with both as an adult

does it sound to you like OP has ‘thrived’? This as picked up by a psychologist after a breakdown. It really depends on your definition of ‘struggles’? I know a few people who have been diagnosed after their children have because things have then slotted into place. They have ‘struggles’ but maybe not apparent to other people as they have relationships/ jobs/ pay their bills/ no criminal activity etc. but there’s an internal struggle and often less than great mental health.
neurodiversity is a spectrum, you have to have enough traits to reach a diagnosis. Diagnosis is based on male presentation so if you’re a woman OP you are at a disadvantage. Some of the compensatory mechanisms like masking used more by women are linked with poor mental health. I think ND is way more common than previously thought. I think what you have to ask yourself is whether spending the money or pushing for a second opinion will change things for you, over just accepting and using strategies for ND people

Thank you.

Is the ADOS assessment the multiple choice questionnaire? Or is it where you speak with the psych a few times?

She spoke with my mum on the phone but she couldn’t really help with any insight as she’s in her 80s and doesn’t remember much from my childhood. Although when I ask her certain things she does give some insight (ie: I couldn’t stand being hugged, was very hyperactive and quite violent (knocked other children’s teeth out), etc.). Unfortunately she failed to mention anything relevant on the phone call it seems. I think she actually has more ASD traits than me.

You would have known if you had done the ADOS. Making a story out of five objects, describing a picture book (could have been about frogs) and more ridiculous things.....well they feel ridiculous.

I thought I masked well and that they wouldn't see what I have lived with for over 40 years. I didn't think an ADOS would show my difficulties. In fact it did, it was all very obvious to them and I scored really highly.

A psychiatrist is well placed to judge. The symptoms of ASD are now so watered down (thanks to social media) that most people could feel they have various traits.

OP, I know a number of people who are far from thriving in their lives because they have profound difficulties in making a decision, with procrastination, constantly second-guess themselves and are crippled with anxiety.

Some of them have been diagnosed with Adult ADHD on the NHS. These are mostly men, who have good professional jobs but are underperforming relative to their competences and skillset, IYSWIM. I don't know any women, who seem to present in a very similar way, who have obtained an NHS diagnosis. In fact, because they're in relationships and have a family life (no matter how chaotic), and have to work ridiculous hours in order to cope in the workplace, they're told that they have no problems.

There seems to be a cohort of people who are automatically excluded from an assessment because they don't have adverse school reports. This is despite them being chronically bad with money because they constantly miss deadlines, can't keep on top of essential organisation etc., have a fraught family because of their procrastination etc.

I don't know why there isn't a relatively straightforward signpost to services to help people to manage these features that have such profound impacts on themselves and others. It might do a lot to alleviate the stress and profound anxiety that accompanies these difficulties.

Nope. My kids all assessed for asd first as wouldn't diagnose adhd until 6. Only one is dual diagnosis

"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.

@MoreSleepPleasee You could ask for a diagnosis and do the questionnaires, your GP is unlikely to put you forward for one though unless you have very strong traits.

Not the case with our GP. They take our opinion.

@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.

It sounds like you had some sort or pre-assessment, the psychiatrist is unlikely to be particularly knowledgeable on ASD and the panel would likely just rubber stamp her recommendation. Did you fill in lots of questionnaires? It sounds like you may need to ask again. If you have the money, this lot are reasonably priced (850 EUR) and NICE compliant: www.adultautism.ie

That’s interesting thank you.

Symptoms like ADHD can also be bipolar, anxiety, hormonal or thyroid etc. It's best to see a psychiatrist without a set diagnosis as a goal. Just say what symptoms you experience.

i think the pathway is better now, than it was 10 years ago for instance.

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:

1. 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.
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.

My autism assessment was incredibly thorough.
You can have some "symptoms" of autism without having autism. Just like you can have some symptoms of cancer without having cancer. You've got to have lots of autistic qualities and be strongly affected by them to "qualify". You could have something else, like OCD.

@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.

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.