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.

I have found the diagnosis helpful. It has helped me understand some of my past and some of my current difficulties. I also have ADHD and cPTSD diagnoses. I suspect I am probably dyslexic as well. I don’t have a diagnosis of that but use some assistive tech for reading and when writing more formally, etc.

Oh, I think society is disabling in part and could certainly be better, but I also think even if you removed all that my DC and I would still be disabled by our autism itself.

I am not a lawyer. I work part time for an organisation who support parents with disabled DC. That covers a range of things, including DLA and PIP. I also support others outside of that role too.

I thought you must be in the field - or it was one of your special interests - because you are so knowledgable. Thanks for sharing. What an amazing job you have. Must be rewarding but also very very frustrating I imagine. I used to help adults get PIP in a previous role and that was a challenge at times.

Surprised as he sat there full on ADHD mode but relieved that she could see the ASD traits that I can. Recommended doing the RTC pathway due to waiting list times but does think he’s probably got both ADHD and ASD. No surprise to me as he is very similar to me and his half brother on his dad’s side even though they’ve only met 3 times and all in the last year.

Did you see the program with Dr Claire Mosley Do you have ADHD? I took from watching that, even if you meet all the criteria/tick all the boxes, if you’ve managed to cope with life using different strategies then you won’t get a diagnosis as your day to day life needs to be impaired by it. I may have misunderstood but I don’t think I did. My concern is because I’ve masked all my life this would indicate I’ve coped and it doesn’t impair me. Is this right?

That is my understanding. Same with autism - part of the diagnostic criteria is it significantly impacts functioning. That’s why I can’t get onboard with the whole ‘autism is a difference not a disability’. For those who ‘are winning at life’, I’m not saying they don’t have autistic traits but do they actually have autism?

Can you share any insights relating to autism in girls?

My daughter is 4 and younger child is 3. We're going through the assessment journey for my daughter with suspected autism - I had some observations from when she was around 2.5 years old, and at age 3 her nursery requested we get a referral. Her last nursery setting did not see any obvious indicators (they did note she was attached to one particular friend, spoke reasonably monotone and slowly but otherwise nothing to call out), however we believe she was masking all day and at pick up we'd see 45 minute meltdowns which she wasn't in control of. She'd later say she know what she should do but just couldn't.

She is incredibly bright - she is now 4 and has been doing maths at the level of the class above her, she zones out a lot and can't hear you, focuses very deeply with fascination for certain things, she organises things, lines things up a lot, but struggles with sensory overload to brightness and noises. Transitions and changes are always incredibly hard (for example, meltdowns used to be triggered if we drove a different route, parked in a different place etc) especially at pick up times. She also presents with PDA, and everything has to be a set way, she struggles to adapt to other ways of doing things. Meltdowns are very frequent at the moment and can vary from 15-60 mins long. During these she'll often scream, shake, and tries to get feedback from herself by clapping her hands or stamping (she previously went through a phase of slapping herself). She sometimes just takes herself off into a bit of a shutdown instead, and hides. We don't know what to think, as her last nursery said they saw nothing but we see a lot at home, I guess I'm asking for input to understand if we should keep waiting for the assessment recall, or if there is nothing to see? It feels like we shape decisions every day to manage things.

Sorry for the long question and post. I also wondered when you might see ADHD indicators? What could these look like in a young child?

We have another child and I sometimes worry we're seeing signs of ADHD. They are always up through the night, can't sit still and is always jumping, climbing everything in sight, goes at a million miles an hour, but can have intense focus too. Maybe I'm just over worrying and miles off.

Thank you for your time, and such a helpful and insightful thread.

The assessment service I work for only assesses women and girls, because the presentation is so different, and not well understood in the field, and we feel strongly is underserving women. We see women and girls vastly underdiagnosed, missed diagnosed, and late diagnosed across the board. It is very frustrating.

The ADOS-2 (the latest assessment tool) is still incredibly male-centric, and most practitioners are trained in the male presentation. Sencos are also very poorly trained to recognise the female presentation (there have been studies on this before anyone jumps on me).

I wish it were different. From what you have written - the intense meltdowns on arrival home, I would be considering assessment, but then she is very young. Every provider is different, and Im qualified from 30 months to assess, but I feel more comfortable from 8 for both personally.

In what ways is the ADOS-2 make centric? Do you have an example?

Ok so take me for example - and many of my clients. If I don't have the right scaffolding and support around me I crumble and really really struggle. However, if I do then I am thriving and look and feel like im 'winning at life'. If I had an assessment now I would still show as autistic and adhd, but I have implemented coping strategies and set up my life to minimise the impacts on my functioning. Its still there, but I manage it well. At other periods in my life I didn't and couldn't. Does that make more sense?

cagerumbonate this is a good read. Sex Differences on the ADOS-2 - PMC

Great question fuzzypeach thank you. Well 'impaired' is a loaded term isn't it. I don't think it means you are coping really does it because if you have been masking all your life you likely have some level of depression and anxiety because of that. This is why there is now so much uproar over ABA - social skills training - because over the past few decades we now know trying to 'teach' autistic people to fit in was actually doing more harm than good. We were actually encouraging masking, can you believe! Seems so barbaric now, but that is still going on some places. It makes no sense, and has lead to so much mental illness due to its practice.

So regardless of how you are behaving outwardly to the outside world, my question would be what is going on inside? People often would say to me 'but you are so capable?'. I wasn't, I was drowning. I just hid it from others. Until I couldn't anymore. That's really common we find. Thats when symptoms of C-PTSD, hypervigilance, anxiety, depression, suicidal thoughts etc- all that may come screaming to the surface. Have you heard of autistic burnout? Its pretty common in women over 40. Its the years and years of masking, plus peri-menopause hitting, and then the wheels fall off. If you are happy and fine inside and outside, and it doesn't impair you then fine. Carry on as you are - embrace your difference, why wouldn't you? But if not, then it would be worth pursuing a diagnosis I think, and I disagree with that Dr that you wouldn't get a diagnosis - maybe in some services but you certainly would in my service. BUT we specialise in female neurodiversity.

Please note this is all just my professional and person opinion, which I am giving freely. I know not everyone will agree with me and thats fine. But please be respectful. Thanks.

I believe in order to get a diagnosis, you have to prove that the autism is causing significant problems in your life - that's certainly the way clinical partners do it, so this would rule out those who have asd traits but who are getting on just fine in life and don't feel they need support.

Thanks for taking the time to talk about this, its very interesting to see the other side.

Hi, I've gone through the thread and don't think this has been answered.

If an adult wants to be assessed for Autism or ADHD but they don't have a parent able or willing to provide information about childhood, does that make diagnosis impossible?

No. It helps - the more people we can talk to the better - but no its not necessary. We often have people with parents alive who just won't accept there was ever an issue and there isn't now. That's pretty common actually, so we have to work through all of that.

Thats true - but the 'significant problems' could be symptoms of depression etc due to masking. So the appearance of coping is actually causing mental health issues. Does that make sense?

Thank you magictits for starting this thread, it’s been so useful and I really appreciate the time you’ve taken to reply to so many posts. Thank you!

I have a different view about masking.

I think everyone masks. We all have a personal unguarded self who we only show with family and close friends and a variety of masked selves we use in different circumstances - a professional self, a self who talks to the doctor about something really worrying, a self who deals with Great Aunt Lucy who has dementia, and so on.

I feel like some autistic people have picked up on this idea that they must be their "authentic self" or dire consequences await. But actually it's fine to not bring your whole self to work, but your professional self, so you don't call service users arseholes and fart loudly in a meeting like you might while watching TV with your partner.

To me the difference and the perniciousness of autistic masking is that autistic people in the past, inadvertently via messaging and teaching around trying to be as NT as possible, often felt subconsciously that their authentic self was unacceptable. They had no space where they felt fully accepted and acceptable as their authentic self - and it's that imo which is so corrosive.

To me the sweet spot is telling people it's ok to mask if that helps you cope during the day, but it's also important to acknowledge that one is ok as one's quirky autistic self and to find a space and time -and people - to embrace that. I think giving autistic people the idea that NT people don't mask and that it is deeply damaging to do so at all, is almost just as problematic.

@magictits I hope this doesn't come across to you in the wrong way, but, to me, the fact you need to think carefully about ‘scaffolding and support’ shows actually autism does cause a significant impairment now. You may appear to the outside world to not be impaired, but that is only because of the careful management of your life. Someone not impaired wouldn’t have to think carefully about ‘scaffolding and support’.

@Millionsofmonkeys I agree and my Mum has always said the same thing to me regarding masking.

My way of not masking is I’m fine now with acknowledging when I’m struggling with something and explaining why - for example if I’m confused at work I’ll just ask people to clarify without worrying they might think I’m being deliberately awkward.

I agree with you here. I don't like the word impaired though. I think difference, or struggles/challenges is better. Impaired suggests there is something wrong with the person, and I don't think there is. Im not trying to be the word police here by the way, just words matter I think - especially around 'disability'.

Thanks for sharing this. Its a really interested perspective to me, and I read it twice and have thought about it. I think that NT people don't mask. Not in the way a ND person would. So yes I believe NT people adjust to different settings and situations - for what is the social norm - but I wouldn't have called that masking. So I think our idea of what constitutes masking is different.

I think giving autistic people the idea that NT people don't mask and that it is deeply damaging to do so at all, is almost just as problematic.
This part really jumped out at me. I do believe NT people don't mask (by my definition anyway) and I do believe its deeply damaging to do so. All the research says it is and 'unmasking' which can be near impossible, especially at my age - I think is a hugely beneficial and a necessary process towards better mental health. It doesn't mean going up to people in the street and swearing at them - thats not unmasking. Can you expand on why you think its problematic? Im always open to learning.

First, can you explain what you think ND masking is, by your definition?

Not really a question - just an observation.

No disrespect but it seems like a high percentage of the population appear to be diagnosed as autistic these days and yet still have degrees - as do you - and go on to have very successful lives and careers.

My adult DD has a PCDH gene mutation - very rare - and one of the effects of this is autism. However, you wouldn't really need to assess my DD as hers is so severe.

She is verbal but only speaks like a 3 year old, has terrible meltdowns and throws huge tantrums, is demanding, destructive and can be violent, there is very little negotiating with her and she is extremely stuck in her routines. Rinses out anything liquid she can get her hands on etc. etc. The list is endless and her obsessions often change to something else after several months.

I am just mystified that my daughter's condition bears little resemblance to the above mentioned people and yet it is still classified as the same condition.

Don't you feel it is time severe autism is given a different "Label" as whenever you tell people - who have never met my dd - that your DC is autistic, everyone rolls their eyes at you as if it is a relatively easy condition to live with now as even celebrities are claiming to be autistic.

If only! In my opinion they are totally different conditions and just saying that your DC is at the far end of the spectrum is insufficient. I know youngsters and adults we have met who are even worse than our DD.

How is someone with down syndrome or someone who is non verbal diagnosed? Are the assessments adjusted for them? I was given the awful frog book although they look more like toads and asked what the frogs were doing and to tell a story. The frog toads freaked me out completely and I had no bloody idea what they were doing but how can somebody non-verbal answer the questions on the ADOS?

millionsofmonkeys

Well its suppressing and controlling their autistic traits. Hiding their autism in order to 'fit in'. A NT person couldn't do that by definition because they don't have any autistic traits that they need to hide.

More specifically, they would rehearse behaviours that they would use for social situations, hide their special interests or reduce how much they talk about them and how, and develop social mechanisms to navigate certain social situations. This can all be consciously or unconsciously. It reminds me a bit of Bella in Twilight when she turns into a vampire and she is meeting her Dad for the first time and she is having lessons on 'how to act human'. For some, for example, with eye contact they are literally counting the seconds until they can look away, and it makes their eyes burn, or count when they can break the smile - all the little things that NT folk don't have to do.

I dont deny that of course NT people do have to adjust behaviour to meet social norms, but for those with autism masking is a whole other level.