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 think you have a point. I don't like the levels, and Im glad they don't do that now, because how do you define a level? Its just too hard.

But severe like your daughter it would be better I think. Its something that people in the field argue about all the time. Because you can get someone who without support is absolutely not functioning, not working, not leaving the house, not having relationships, extremely poor mental health - and then with the right support all that can change. The right job for them, the right scaffolding, the right support/scaffolding whatever you want to call it, and they then can be what society would deem as thriving - job, relationships, social life, and improved executive functioning. For some, no matter what you put in place, its not going to be that they can function that well (by societys standards). Improvement maybe, but they may not ever be able to hold down a job, live independently etc. I get that.

So yes, I think some way of defining autism to separate those who are severe and likely to never live independently would be a good idea. Although I do recognise the issues with that too. It sounds very hard for you, Im sorry.

Thank you so much for your excellent response and for the recognition that we parents of DC with severe autism really need this.

I'm so pleased to hear it has been raised at higher levels too as I must admit to feeling resentful at times of people who say they are autistic but earn 100K per annum.

I recall many years ago my DH went to a National Autistic Society meeting and got chatting to a lovely couple who then proceeded to tell DH that they didn't know their ds was autistic until he took his driving test. (DH very politely excused himself at that point and came home. He said there was nothing there for us as no-one else attending had a clue what we were dealing with.)

I must admit that we both feel very lucky. Our DD had to go to 52 week SN boarding school from the age of 8 as the specialist day school for autism couldn't cope with her needs.. this was devastating at the time but turned out to be a Godsend. We still saw her every weekend and then when she was 19 we managed to obtain a place in a brand new supported living centre very close to us where she is blissfully happy 12 years later and the staff are amazing. We now see her 4/5 times a week and are very close although we still get a slap or thump when something doesn't suit. 😂

Again I really appreciate your response. 👍

I’m late diagnosed AuDHD but got really stuck on the “can you stay in a chair when expected to stay seated?” question. My Autistic side says if the rule is to stay in the chair then the rule must be obeyed (so yes, I do not leave the chair) but my ADHD side makes it impossible to sit straight with legs facing forward (so not really ever seated in the chair).
My assessment says I do not meet the criteria for that question, but it’s a really odd question, especially for self reporting.
What is the chair question getting at?

I wholeheartedly agree with you. I will sit in the chair but inside Im screaming, and this will manifest in me skin picking, twitching, rocking, biting the insdie of my mouth, and being desperate to get out of it.

HOWEVER, if Im in full hyperfocus (for me, that is around work, or an academic paper) I will not move from that chair for hours on end and then only for essentials like peeing (not even eating, drinking or sleeping) - those need timers to make me, otherwise I get urine infections, dehydration etc.

So the question itself isnt enough. We have to dig far far deeper than that.

You are more than welcome. Sounds like a happy outcome. Im really glad you found something that worked for your family.

@Hobbiestwriter
I’m a psychologist working both in nhs and private practice.
every area is different, but for nhs autism assessment the referral will have come from a paediatrician or GP. Myself and at least one colleague (as part of a MDT) will make the diagnosis not a medic. This is usually a speech therapist or occupational therapist. In my private practice children will see a paediatrician at the end after a diagnosis is already given.

ADHD is different, and in my private practice it is myself and a paediatrician. But we work together and agree on the diagnosis / or not. In the feedback meeting paediatrician will discuss next steps like medication if appropriate and then review this moving forward.

You see I think a lot of NT people do do most of that stuff. Ok it's not suppressing their autism per se. But putting on a brave face; pretending to be less shy than one is, or more confident, or really interested in football to get a guy to like you, or that you are not into Abba because to admit you like it would be social death. Panicking that you don't have the "right" haircut, or bag, or shoes (especially in teen years). Worrying that people won't like you. We absolutely rehearse what we are going to say etc. Maybe some very robust non- introspective extraverted NT people genuinely don't, but most everyone I know certainly does. In fact my DS has always had a certain freedom in this respect as his particular autism manifestation frees him from giving a damn about what other people might think of him.

There is some research that suggests that the main area of difference between autistic and NT people is sensory masking. Here:

“Masking Is Life”: Experiences of Masking in Autistic and Nonautistic Adults - PMC https://share.google/su2kttZVGhbTfmTNw

Why do I think messaging around masking is pernicious? Because I think it gives autistic people the incorrect impression that NT people are sorted, don't mask, don't introspect, don't worry about how they are perceived socially, don't lie awake at night wondering if they have offended X or if Y hates them. When in reality most adults are fucked up one way or another to a greater or lesser degree by their experiences, upbringing, traumas, etc and just trying to make their way through the world as best we can.

I suppose I mean that I don't have a direct insight into autistic masking but I do know for sure that I have many shields I adopt in different circumstances which I also find tiring, and so do most other introverted people I know. I adapt this to reduce draining my battery too much - for example, if I have to go to party, I will spend 30 mins circulating and chatting "showing my face", then I retreat as far away from the loudspeaker and just talk to someone I already know, ideally in a quieter room away from the hubub. If I am in a pub with loud music I ask them to turn it down a bit or leave. If I am talking professionally I am substantially more confident and assertive than interacting with someone outside my professional sphere.

Fwiw, my kid's severe burnout was triggered by expectations of NT learning trajectory in the national curriculum, and this causing huge cognitive dissonance and incremental trauma as a bright autistic person who couldn't flourish in a NT education curriculum.

@magictits are you familiar with the concept of communication load?

millionsofmonkeys
Ill come back to this more later, but just wanted to say that I know that some autistic people cannot mask (one of my daughters can't and one can). The one who can't is far far happier tbh. The one who can, and does scarily well is the one who suffers the most with her mental health. I do think being autistic and not being able or just not masking is an absolute gift. I myself scored very very highly for masking, and have had lots of issues with my mental health. I have gone through a period of trying to unmask, which is extremely hard considering its so unconscious for me, and Im positively ancient so its hard to unring that bell. But im trying.

I will respond more later when I have more time. Fascinating subject thank you!

My non-masking DS isn't happy unfortunately. Life is very difficult, people are very difficult. Since crash 6 years ago there has been some progress but aged 25 we are a very very long way from independence or working.

He has some freedom around not caring about NT people's opinions, for sure, but he cannot function in a world of NT expectations.

Im sorry to hear that. Its really hard watching them suffer hey. x

Thank you so much for this thread, OP - it's gold dust. We are a ND family but only myself and DD have ADHD diagnoses. I suspect we are both also autistic but find it so hard to talk about with DH (who also has loads of autistic traits but rather different ones) because I'm not articulate enough when to comes to explaining all the contradictions (like the one you highlighted in this post) and somehow make it all sounds wishy washy and made up. But the masking is exhausting and I'm worried for DD as she reaches adulthood - she'll be heading off to uni next year and I feel I've failed in equipping her for adult life and she'll just crash and burn from a mental health perspective in the same way I did. And under the surface I have this constant nagging feeling that I should just be doing better / working harder and that I'm failing by taking medication (which doesn't in fact even work that well for me). Anyway, I really appreciate the time you've taken to explain things here that I struggle to put into words or even reconcile myself to.

You are more than welcome. Sometimes we get so wrapped up in our jobs/life that its good just to talk to others about what we do. Its good reflective practice I think and its given me some food for thought for sure. Which will help me be better at my job, so Im very grateful for those who have shared. Its brave and really helpful for all. Its a delicate subject with a lot of controversy and differing options surrounded it as this thread is highlighting.

Words do matter but I’m starting to think the problem is we use words and interpret words differently. For me the word ‘difference’ as opposed to ‘disability’ or ‘impairment’ feels really minimising. So when I hear other autistic people say they aren’t disabled by their autism, it’s a difference, I assume that person to have no difficulties and therefore think how are they even autistic. But from what you’ve explained that’s not the case?

I definitely agree with this.

I’m not sure if I mask or not. I certainly don’t ever think about whether or not I should smile or make eye contact and how long for. I do rehearse conversations. Like before I go to work I repeat in my head ‘I’m fine thank you, how are you?’ Over and over so I know what to say when someone asks how I am. Of course when I get there and they ask that’s not what I say 😂 No one has ever said I don’t look autistic or been surprised by my diagnosis.

Thats how I see it. Im not disabled, my daughters arent disabled, we are different and live in a society that isn't neurodiverse-friendly, so we can have some struggles, but with the right set up we can do well and be happy. But we always have to be mindful of that. I dont see that as minimising, I see it as empowering, and strengths-based (sorry buzz word in social work) and affirming. So people with autism aren't less than or need fixing. There are some challenges but there are also some amazingly positive things about being neurodiverse. For example, neurodiverse people can make the worst employees (in the wrong job with the wrong or no support) or the most amazing employees (in the right job based around their special interest with support and adjustments if required).

Little anecdote here. Just my musings (apologies I do these tangents often as youve probably noticed) but I am a huge history geek. I visit historic sites weekly and I love talking to the volunteers. I was at a famous castle last week, and it occurred to me that I bet a lot of these volunteers are neurodiverse and this was their special interest. One of them told me they move about in certain parts of the castle, and I thought about the weapons guy (he was fascinating and it clearly was his special interest and people were edging away from him so he wasn't getting that not everyone wanted to hear about weapons through the ages as he did). I would put money on it that they didn't move him ever off that section. I caught the person on my section (tudors - Elisabeth in particular), and of course she met her match with me, so we were just talking for ages whilst my very patient boyfriend stood idly by. Anyway, my point is a neurodiverse person in a job that is their special interest will be amazingly dedicated, and you will never have problems getting them to do their work - getting them to stop and take breaks is another story.

This is why the education system doesnt work for ND people because its set up to know a little about everything, and we don't want to know a little about everything, we want to know everything about only what we want to know about.

I've really enjoyed your explanations and insights. It's been helpful to me with people with autism in my family. So thank you for taking the time to do this.

Perhaps I’ve just not found my place in the world yet. I never feel like I’m thriving and I loathe working. I can’t think of a single job I’d feel comfortable enough with to actually enjoy.

For adult assessments where you have to rely on information from their childhood, how do you deal with parents refusal/downright lies about childhood to avoid a diagnosis?

That's a use of the medical model of disability though. The social model would say that one is disabled by one's environment rather than because one is oneself defective.

My opinion is that my DC and many other DC are definitely disabled by being autistic in an NT world.

Sorry but what I have described here is the social model of disability. Are you saying ive described the medical model? Im confused. Have I misunderstood?

Honestly we are so used to that. My own parents were in complete denial for some time, and saw it as a criticism of their parenting. Lots of tutting about how 'everyone's autistic now' and 'but you were just quirky'. Took a good year, and a lot of educating them for them to come round. To their credit they really have, but not everyone does. My assessor talked to them, but their defensiveness and minimising was pretty typical.

I am sorry my choice of wording to describe you upset you. That wasn’t my intention. I used the impairment/impair because the diagnostic criteria were being discussed and that is the wording used in the ICD-11 and DSM. I agree language is important, but I don’t see impairment as meaning something is wrong with you/me/others. I suppose that is different preferences.

To me, disability doesn’t equal being less or needing fixing. To me, autism is a disability. And someone who needs to carefully manage various elements of life to manage is disabled. I appreciate you feel differently.

@AuADHD the ADOS has different modules, including for those who are non-verbal or pre-verbal.

It’s really difficult and Im very disappointed in how my in laws are managing it for my DH. He’s now put me as the main person for interview but it feels like they’re intentionally messing up the form. And they have a DGS who is Asd and they accept that so it’s frustrating and makes me question their views on him too.

Hi,

Thank you for this post. I have a nursing background and have been qualified for a number of years. I have worked in a range of settings, both inpatient and community.

I have been wondering what route one can take into becoming a ASD/ADHD assessor. I unfortunately, can't find much information online. So, I was happy to come across this post.

I am passionate about this, particularly because I have a cousin with AUHD, and I suspect that myself and DD may be autistic.

DD is very academic, has been reading since 4 at a more advanced level for her age. DD is also interested in Art and is very skilled in this area. I have noted, that when puberty hit DD has been experiencing struggles- difficulty speaking to new people in social settings, emotional outbursts when there is a disagreement about a topic she is interested in and feels she knows more information about. DD also requires very specific instructions when asked to do something, otherwise, if you don't specifically ask, she will tell you. I didn't know i was supposed to do 'A' or 'B' as you didn't tell me to. DD was also a toe walker till about 5 and has always been considered as mature & academic so I feel like this has led to some struggles being overlooked.