Im an Autism and ADHD Assessor - AMA

[magictits]

I get heaps of questions about this IRL so thought I would post here and answer any questions in case they are helpful to anyone.

Any tips for my son’s first ADHD appointment on the NHS this morning please?

AuADHD. Encourage him not to mask, just to be honest about how he is feeling during the assessment, and just to be himself. If hes struggling then say so, and why. Its better if we see it all so to speak. Also, if he needs a break then ask. A good assessor should be fine with that.

Thank you. He’s a bit nervous and so am I. We both suffer from either verbal diarrhoea (see previous post!) or clam up. He gets his silly head on too or goes off on amazing tangents.

I really don't think thats accurate. I think for DLA its considered a 'mental condition'. FWIW, I don't think its either. I know you arent asking me specifically, but it doesn't bare any relevance to me on whether I think some children should get benefits. Or adults. I think the diagnosis shouldn't - as it doesn't for PIP - I do think the struggles one may have should though. And that is very person-centric.

Someone asked me about levels earlier - I forgot who sorry. I worked in oz for sometime where they did and still do, and here they don't. I agree wholeheartedly with the system here. Levels are quite confusing and ableist in my view and not terribly helpful. Someone can be thriving academically, in work and socially, for example, but struggle deeply with everyday tasks. Spiky profiles are common.

Also, someone asked about how you separate trauma, menopause, ADHD and Autism. It really isn't easy as there are lots of crossovers. Thats why it takes hours and hours of assessments, discussion with MDT, gathering information and history. We need to know we aren't missing something or misdiagnosing. As I said before, trauma and menopause/puberty commonly increases symptoms of adhd/autism anyway, so it often doesn't mean its something else it just means thats when it becomes a greater struggle for the person. Things getting better later, maybe due to a lifechange, or the correct scaffolding for that person, doesn't mean the diagnosis wasn't correct. For example, a person with adhd in the wrong job for them without support could be really really struggling, then they find the right job for them witht he right support and that improves their mental health and wellbeing and they appear to be 'cured'. They aren't cured they just have the right set up for them.

Dont hide any of that. xxx.

And you both sound awesome by the way - I love it when people go off on amazing tangents!

I think for DLA it’s considered a 'mental condition'.

No, it isn’t. If that was the case DC with autism (and no other physical condition) wouldn’t be able to e.g. satisfy the criteria for HRM under the VUW criteria which requires a physical condition as one element of the test, and they currently can. As I said, case law established it. You might not agree with that, but that is a separate point as to what it is currently recognised as.

flawflessflipper. Thanks, I stand corrected. Im really curious though - are you saying that DLA is only paid for physical conditions then? Not for any mental conditions? And if so, I wonder why that would be. Because that's not the case for adults (Pip). So why arent the DWP awarding DLA for mental conditions. Or have I misunderstood what you are saying. As I say, I am not a benefits expert, but it is good for me to know this stuff. And Im genuinely curious. I know a lot more about PIP than I do about DLA.

Absolutely not! DLA mostly depends on needs rather than the cause. However, to be eligible for high rate mobility (HRM) under the virtually unable to walk (VUW) criteria one part of the test is there has to be a physical cause. One way of proving there is a physical cause is via an autism diagnosis. For HRM under the severe mental impairment (SMI) criteria, one part of the test is there has to be a state of arrested development or incomplete physical development of the brain. And one way of proving that part of the test is via an autism diagnosis.

I disagree. I can understand your argument but surely it only applies to people, for want of a better word, with ‘level one’ autism. How is it just a difference in those more severely impacted or those with profound autism? How is society disabling a person with severe or profound autism? I feel like those more severely impacted by their autism are always forgotten in these discussions.

I think old school Level 1 and level 2 maybe, but Level 3 you have a point. Severe autism would be tricky no matter what society looked like - i grant you. But I do feel a lot of the reasons people struggle is because of the way we the world is set up for us. I often wonder what improvements there will be in 50 - 100 years time, and will these struggles for neurodivergent people drastically reduce. I think they will. But they will always be there, for sure.

Ah ok. I misunderstood. I thought you were saying you could only get DLA if you had a physical condition - but you are saying high rate mobility. Got it. Sorry if Im slow this morning - need more coffee! lol. That is interesting though. I dont think that is the same for PIP. I wonder why. I know it is notoriously hard to get enchanced mobility with an autism diagnosis, and one has to prove severe psychological distress when going out, and needing someone with you. So definately not physical.

Hugely uncomfortable with the severe mental impairment criteria tbh - there is no way autism is a 'state of arrested development or incomplete physical development of the brain'. Im not disagreeing with you that they consider autism to be such, but I find that utterly abhorrent. I understand work arounds for parents who desperately need support - and I support that completely. But language matters, and that criteria to me is wildly ableist and is completely incorrect and a gross misunderstanding of what autism is.

For PIP, being unable to undertake any journey because of overwhelming psychological distress only scores 10 points, so standard mobility. For 12 points under the planning and following a journey criteria, you have to prove you cannot follow the route of a familiar journey without another person, assistance dog or orientation aid (overwhelming psychological distress alone wouldn’t satisfy this although related cognitive impairment can).

Some of the PIP activities look at the cause of the difficulties. For example, there was case law about whether a claimant’s inability to use public transport because they were unable to walk far enough should score points under activity 11d. The outcome was inability to use public transport purely because a claimant can’t move far enough cannot score on activity 11 and that mobility difficulties like that are covered by activity 12.

SMI is used wider than just DLA. For example, SMI is also used for council tax exemptions too.

DD2 was diagnosed before the switch to ASD. Her diagnosis is Asperger Syndrome. She is still disabled by her ASD. Even if society was more understanding and geared by for disability, she would still be disabled by her ASD directly. I also have 2 DSs with ASD and I am diagnosed - we wouldn’t have been diagnosed with Asperger Syndrome because of language delay but the same applies to us too.

flawlessflipper That is so interesting about case law. Are you a lawyer or just very knowledgeable on the law? I know the law around disability can be very confusing and inconsistent.

I totally respect that is how you feel about society not disabling you and your children. Thanks for sharing.
I am autistic and adhd myself - as are 3 of my four children. I dont feel the same way though. But that's ok. Have you found the diagnosis helpful for you all?

The specialist nurse said the autistic traits were showing stronger but recommends full assessment for both so he’s been referred to the next stage of assessment.

Ok so how do you feel about that AuADHD?

How did she get to be assessed and diagnosed for you know she is autistic by such a young age when she doesn’t have any disabilities?

One of my children was diagnosed at six and only because of pages of disabilities and sensitivities. She is disabled and goes to a specialist school. Another one of my children is autistic and we weren’t even aware when she was five because it was much milder.

I have a friend who has I think significant traits of autism. They agree but say - What's the point in a diagnosis. What would you say is the practical value in a diagnosis for someone who acknowledges they are likely autistic but think they have coped for the last 50 odd years. For me, I like to know stuff but others would not. In fact I know a few people like this.

I know you aren’t asking me but to give my option, the only point to it for me was to explain to my children that I am also autistic (like they are) and it hasn’t stopped me going to university, getting married, having a family etc. I saw it as a way of positively role modelling the future because a lot of what people read about autism might be quite frightening when you are young.

For me it was the difference between thinking I had coped for 40 years and realising how damaging that had been to me.

Same.

i think that for those who have and are coping really well, really winning at life, no anxiety or self-esteem issues - then yeh why bother? (except for the previous poster who said about their kids, which is lovely).

For most, I would say validation, understanding oneself, helping those around you to understand you more, and developing better tools to just make life a bit easier are all good reasons.

A few questions from me please...

• What's your experience with diagnosing both Autism and ADHD in an individual? Has any one come to your service looking for both assessments at the same time?

• Do you always have interviews with family members of adults seeking diagnosis?

Both my parents are dead and even if they weren't, they were estranged and I wouldn't ask them to get involved. I have a husband and maybe older siblings to ask but it does make me anxious getting others involved.

I'm currently on the waiting list for both assessments and I put on my form that I'm pursuing both. I'll be really annoyed if I get dismissed because they might only want to do one at a time. I know even in the past decade it was almost impossible to be diagnosed with both, but that's changing now AuDHD is recognised. I think that's why I went under the radar for so long. The effects of one disorder masks the effects of the other for me. My brain is never quiet but words rarely get out of my mouth when I'm around strangers. However, I special interested so hard in human nature I basically studied how to act around people to fit in. I thought everyone was doing this analysing as a teenager but clearly not. 😂

One reason I'm pursuing diagnosis is because I'm shit scared of becoming unfunctional as I age, just as I watched my mother struggle with daily life around menopause. I had really bad days in my early twenties where I could barely get out of bed to eat, and I dread to think that happening again when I'm old and vulnerable. I'm hoping there will be medication or benefits I could access, with the proof of medical diagnosis showing I'm not just "faking it" as some misinformed people like to accuse disabled people of doing. Otherwise right now I'm muddling along under my own coping mechanisms (and savings!)

Quite so! I saw a consultant psychiatrist of 30 years experience who completely missed the possibility of ADHD even though he commented negatively on me masking and my ability to hyperfocus (at the time i didn't know that's what i was doing), he said i didn't seem to be depressed. but because that's why I'd been referred, he just slapped a rediagnosis of depression on me and a prescription for sertraline. I was diagnosed with adhd 2 months later and it's been life changing. I didn't need sertraline, i needed to be able to understand myself.

@magictits thank you for the thread! We've been on the waiting list for 2 years for DS(7). He had a social communication assessment on the 29th and it was mostly me answering questions. DS was asked a couple of things but mostly played behind me. Is this standard for that kind of appointment?

The Dr ordered an observation of him at school which she said has a 10 month wait. Does this mean that my answers weren't adequate enough or is this also normal? I've seen your previous posts say it's a multi-disciplinary approach so I'm hoping it's normal.

Also will the process be affected by the fact that DS is starting juniors this year? The staff should know him well enough by the end of this school year (when the observation is likely to happen) but it's not the same as the staff that have been with him for three years already

My daughter was on the pathway for diagnosis from 18 months as she was severely speech delayed , along with some sensory issues and repetitive behaviours. She was still a really happy social child . She had a multi disciplinary assessment I did not pay for a private diagnosis. ( we are based in Ireland ) she just started in junior infants does not require an SNA. DD was diagnosed at 3 and did not speak until she was four .
I think being social and athletic has helped her , she goes drama and a sport. The worst of her behaviours improved once she spoke and she caught up with 4 years speech in 4 months but still requires ongoing speech therapy for sounds. On OT advice we keep her active as she has lots of energy . Don’t get me wrong she needs allowances made for her , doesn’t like large crowds , stims by wringing her hands over and over when upset but she’s funny and cheeky and builds amazing constructions from Lego has friends and does everything in her own time. For now she’s thriving and I take everything day by day . There was a time I was so worried I constantly swallowed down the fear that consumed me. I don’t know what the future holds but if you could see my DD she isn't disabled , I am not in denial as a previous poster said there are others who are disabled I know… even within my extended family this isint my first rodeo with this we are a ND family . apologies for the rant I find being concise difficult.