I am an "autism expert". Ask me anything.

[AutismProf]

Worked in autism assessment, diagnosis and intervention on the education side for 20+ years. Ask me anything.

However, please note that I cannot personally do anything about waiting lists for diagnosis, or the education system, and I won't be blamed for these!

Actually I think if the curriculum could be made available for secondary school subjects up to GCSE in an OU type format many autistic kids who are academically able could skip the whole thing, go through the curriculum materials in 1-2 hours per day and with a couple of tutoring sessions per week in stuff that needs to be more interactive like languages, and then spend the rest of their time pursuing their own interests/ reading/ learning alone, and doing social stuff like sports/ music/ coding clubs etc to supplement those aspects. So much less mental health damage, so much less wasted time, so much more learned, so much more fulfillment.

But the curriculum needs to be provided in an appropriate format to make that doable, with short intros online from teachers and then work to complete. Lockdown style learning was an absolute dream for many, all the sensory hell and hell of the dysfunctional environment and people and boredom that switches off any imagination or intellectual curiosity, gone. The stuff we covered in 5 years at secondary I am convinced could have been condensed into 18 months max, for the kids like this. It's soul destroying, having to live in that overwhelming hell of tons of people and noise and flourescent lights and idiots and bullies and boredom and for what? To waste so much time that could be spent on wonderful things.

Can I be cheeky and ask 2 questions?

What sort of % of autistic people have more than 1 diagnosis. (Am almost certain my DS also has ADHD.)

Also, my son is a big stimmer. Have heard various professionals mention my sons 'tics' and/or restless/fidgety behaviour... when is something a stim and when is it classed as something else like a tic or a fidget?

What?? How is working with austistic kids (in the OPs case) a one sided view?
I am not in the field, but my mom is. She is an autism expert as well.
She works with autistic kids, from assessement and then through life. Some she has worked with for over 20 years, from when they were kids to now adults.
She knows these kids, and their families.
She helps the families at home, sometimes even with baths and meals.

She does not have any autistic family. Her perspective is not one sided! It is, in fact, a lot wider than someone who has a child/sibling/other relative with autism, as theyll only know that ONE reality.

@ASGIRC OP actually does also have autistic kids and family too, so that post you responded to is bonkers!

Indeed!

I just find it so bizarre that parents/relatives of people with autism think they are the real experts, when they are experts of only the ONE kind of autism that exists in their family.

Autism comes in many forms. The people who work in assessment and then the follow up work are the true experts. They see all sorts, and work with people with varying levels of difficulties with their autism.

From the high functioning to the non verbal and anything in between.

One who doesn't struggle with essays here - I have a first class degree, and another where I missed a first by two fucking points (and still bear a grudge).

What do you think about schools who just see their role as trying to teach the autistic child to be less "quirky" - I've had this battle with my own child's school and may have terrified the SENCO slightly with how strongly I addressed a provision plan full of targets basically placing the onus upon DD to mask harder than she already does - versus no onus being placed upon groups like the class bully to be less of a dick.

I'm an openly autistic healthcare professional and we're having quite a lot of difficulty with our professional body at the moment who have updated their guidance on autism, ignored the fact that they actually have many well qualified professionals with the condition working in their field, and then openly ignored the concerns of many and continued to promote via discussion interventions like social skills training (in a "learn to mask harder" manner), ABA and PECS in its most negative form (I'm working with someone at the moment who now has massive insecurity about all of their belongings because of them constantly being removed to attempt to elicit a response from him via a PECS card).

You mentioned earlier that a diagnosis is a good thing. I used to manage someone and they got a diagnosis in the 40's. They said it was hugely beneficial to them and I as his manager was better able to support them. It was so useful to know and understand and help others understand when they were a bit direct in work settings.

My question is how would you persuade some in that age category who thinks they probably have autism, are told by virtually everyone close to them they probably have autism to get a diagnosis. Their view seems to be that in your middle age it's pointless getting a diagnosis. I kinda see what they mean but then I think of my old work colleague and I remember how beneficial it was for them.

I think a multiagency diagnostic team is incredibly helpful to be honest. We benefit from people with medical training for support with some of the cooccurring mental health issues etc. I wouldn't have a clue how to assess whether a description of someone "hearing voices" (not hugely unusual) is early signs of psychosis or part of autism misattributing their inner monologue, for example. The really useful thing about a m/a pathway is that we can draw on everyone's expertise and allocate lead professional according to descriptions in the referral. For example, a child where a great deal of motor coordination and sensory differences are reported in the referral, we put the OT as lead professional, so they can check if it's actually DCD (dyspraxia) or if it's autism AND dyspraxia or if it's just autism but with highly sensitive sensory pathways or whatever.

Post COVID there has been a 40percent increase nationally to child autism referral pathways, but much higher in cities. We just need more qualified and competent staff. Our service staffing was established on 40 odd referrals a month. We regularly get 200 a month nowadays.

Some private providers are great, others not so much. I would look for a small team rather than a sole trader. Do they offer ADOS or equivalent? Do they liaise with schools or settings, or other involved professionals? Have they ever worked in the NHS pathways? Do they offer aftercare of any sort? Anyone claiming to diagnose in a single clinic session for example, is probably a bit suspect.

I would also check that any prof us a member of professional bodies, ie HCPC registered, etc

Thank you.

That's weird. However you do seem to have been referred to SALT, they usually know what they are doing and support referrals to autism pathways in most areas. They will assess his communication and in most areas they offer a range of support/intervention groups for preschoolers with delayed language skills. More than Words, Early bird or Elklan are common choices. Maybe ring your SALT service and ask if you can speak to one of the SALTs working in early years to find out what they usually offer in cases like yours.

When you say DD5, do you mean your 5th child, or your 5 year old?

Given the very long waiting lists (over a year) in most areas locally, she won't get an early diagnosis even if she is accepted on the pathway tomorrow. Given that she's already showing signs of clashing with her environment (meltdowns after school, struggles with peers) I am not sure what the benefits of waiting might be? We aren't looking at quirky but happy, by the sounds of it?

1. Could easily be a poorly modulated reaction to sensory overwhelm. Doesn't sound like narcissism though I don't know much about it.
2. Have they articulated this belief or is this your interpretation from observing their behaviour? Would make a difference...my DS is very poor at taking personal responsibility and doesn't really feel social pressure to help out in the same way as others, but it's not selfishness so much as a gulf in his understanding of family co-responsibility as we get older. He is pretty stuck in the role of 'you are my parents and you look after me' - he has very limited desire for personal freedom and autonomy as related to self care or interfamily care.
3. Hard to say. Siblings, for example, often enjoy winding each other up. Autistic people can sometimes continue patterns outside of age expectations (the siblings in Friday Night Dinner suggest that this isn't exclusive to autistic families!) . I enjoy buying gifts as I love seeing people's reaction (more than getting gifts, actually). I assume you mean eliciting negative responses? This can also be linked with attachment and trauma where young people behave in a way to ensure they are "kept in mind" - and not always positively. A core feature of autism is not doing social interaction and communication completely NT (unless highly skilled at masking) so could it be a clumsy attempt to connect? My son doesn't do greetings but he does a light punch on the arm. If you thought he was "attacking" you, you'd interpret this as aggressive and nasty. But it doesn't hurt, he's no intention of hurting, it's his way of touching since he dislikes hugs or light touch. It's a connection attempt.
4. Again, could be, if someone is undiagnosed they get so much negative feedback through childhood and adolescence that some do develop this kind of reaction to protect their psyche. Either everyone else is wrong, or I am stupid/weird/ horrible like they say....

I really don't know enough about narcissism to be able to say what you are asking of me. What interpretation gives you more peace? If you thought it was undiagnosed autism, would your interpretations change? Would your anger lessen? Would that help you live happily?

Hi copyandpaste. I think I have answered the essence of this question already.

It is an issue that "severe" autism is often a descriptor used in relation to the impact of someone's autism on those around them, not on the person themselves. Resources can also be directed in a similar way, where sometimes schools don't perceive the needs of those who do not express unhappiness through "challenging behaviours". This can come at cost to mental well-being. Of course both groups need support (and those who will always need full time care).

Most early-onset clearly autistic non asperger-type autistic people do, in my experience, have learning difficulties as well, though because of profound difficulties with language and communication it can be hard to tell initially.

On the other hand, most young children with learning difficulties are not autistic.

www.autistica.org.uk/what-is-autism/signs-and-symptoms/learning-disability-and-autism

Sounds like it!
You need the time and space to do the things you love as well, even if those times are not with him (eg going to a choir every week if you live singing and he does not). You don't have to agree on everything, or be in each others' pockets. I would sit down with him and timetable your own times when you do your own things without interference from the other (assuming you want to stay in the relationship).

It's always a judgement - there's no blood test - I am sure we do get it wrong sometimes. However I would imagine missing signs is more common than finding things that aren't there. Autism diagnosis is based on a balance of probabilities given the evidence and personal history. We don't diagnose based on sensitivity, we have to see actual signs of differences in social interaction and communication, sensory systems, and flexibility of thinking.

Is this based on a particular person?

I would buy appropriate literature as if she is, and look at and share online resources. If she's already in the pipeline for assessment and school is being supportive, and she's not in crisis, that is probably a better use of your time, money and energy right now than sourcing an expensive private assessment. Just my opinion!

@AutismProf

Hi there - would you mind commenting on my post please?

It was Thursday night/Friday morning between 00.07 and 00.21 (just gone midnight). 😊

I am trying to work through in order, think there's 3 posts before yours, but my response to @Glitterbaby17 above might help.

I am about to go out with my family so may not be able to return this evening.

Very recently diagnosed here, and rather ‘mature’ - never been an essay struggler, BUT my process is a 9000 word draft for a 3000 word essay and I can then get hugely bogged down in a frustrating process of editing out all the lovely detail that it pains me to be unable to include. It takes ages. I’m classic details first and big picture second in my thinking. I always did ok with writing under exam conditions but I suspect that’s just because I used good memory and ability to stay cool against the clock and knew I’d have no time to go into detail in a short space of time.

I’m interested in your comments about being dubious about assessments in one session @AutismProf my own was carried out by a private provider (well qualified) who saw me for a two-hour initial screening to see if it was worthwhile to recommend an assessment, then the assessment took a day. Really, it felt like a combination of cold case detective work and archaeology in the sense that I am middle aged and have coped very well indeed by being smart and adaptable. Anyone who knew what to look for and who’d seen me aged 7 would have been in no doubt I was indeed an ‘aspie girl’ but that would never have been picked up in the 1970s. I felt the assessment was fair and, as I had no one to comment on how I was as a child other than my memories, it’s going to be a ‘best guess’ I feel.

One of the things that tripped me up for years and led me to believe I couldn’t be autistic is that I thought I was ok with most novelty and change. Your description of thought patterns hit the nail on the head. I get locked into very fixed ways of seeing things, people, myself so the struggle with change is mainly internal.

Such an interesting thread!

My DD’s assessment was carried out by 2 people in 1 sitting in the NHS.

At the big ASD chikdren’s centre in my city.

Thank you for this thread. Could you tell me how much you earn (sorry if this is a bit crass to ask) and how you train as I am interested in working in this area. Can you choose to work privately or for an LEA?

If it's a full assessment in a single lengthy appointment slot that's fair enough, I meant like a one hour appointment, fill in a questionnaire type thing.

Should include full history, observation and standardised assessment though. We observe in two settings as we don't find schools always see the full picture, but that's not deemed essential by NICE.