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!

The hiring of Trainee EPs in Years 2 and 3 isn't widespread (yet), however much the Soulbury Committee strongly recommend it. Once tax and NI are taken off, the salaried wage and the tax-free bursary aren't too dissimilar. Although, you do accrue an excellent pension if employed. It's important to remember that while bursaried TEPs continue to have some protection (for want of a better word) in terms of reserving and using study leave days and so on, there is a worry that this might be lost (to some extent) if the TEP is an employee. It'll be interesting to see how the next few years pan out as salaried Y2/Y3 placements increase.

The doctorate is three years, full time (including school holidays) - no opportunity for part time training. Also, it is strongly advised that you do not work elsewhere throughout the doctorate (some (most?) universities forbid it), as it is such an intense training programme.

Once qualified, as an LA EP you are likely to have a very varied diary, you'll travel between multiple settings in a day. Consultations, reviews, assessments, training sessions, systemic work, planning meetings, EHCNAs, team meetings, CPD, time dedicated to your specialism, project work... there's a lot to fit into your week but you'll likely be quite autonomous in how you organise your week.

It's a great and fulfilling job Sadly, many EPs get to the top of their pay scale (which should be a good 15-20% higher than it is now had it kept up with inflation) and realise that they could earn 3x their salary if they went private, so there is a lot of attrition from local authorities. (The unions are still nowhere close to agreeing our Sept 2022 pay increase.) It's just something to bear in mind!

Hi OP thanks for doing this AMA. Really interested in your comment above. Do you have any suggestions, or can you point to any other sources, on how to help a bright student who is struggling for these reasons?

Also very interested in lonesomeBiscuit's point above. How do you help autistic kids learn essay writing skills?

It seems to vary depending on the assessor and the assessment method. When I was enquiring about assessments as a forty-something without parental involvement, some companies refused to do it. The company I used modified the questionnaire (ADI) so I didn't need my parents, but then said they didn't have enough proof I met the criteria so couldn't diagnose despite the other interview (ADOS) suggesting I was autistic. Pays to research the assessor and their experience with adult women.

Thank you @QNC975 for the really helpful info above! I am 20+ years in and still absolutely love my job. It's the best job in the world (even though salaries have fallen terribly behind since 2010!)

Those waiting to have their questions answered: I am working all week but will continue ploughing through, please bear with me. I am so thrilled that some of you have found the thread helpful.

Interrupting my regular responding to just say - Inanimate - wouldn't this just be fabulous?

To be honest I would settle for the DfE consulting on neurodivergent learning and equality of opportunity....any people from the dept lurking on here, please PM me and Inanimate if you want to set up a meeting, lol.

Another diagnosed via ADOS as an adult here: the assessors were happy to have input from my DP of many years in lieu of a parent. This was with a private company contracted by the NHS to deliver services in my area. I have offered to give input for my younger sibling if they choose to go for an assessment.

As I said, I don't work in adult services, however those adults I know who have decided on formal assessment have found it helpful. It also enables people to ask for reasonable adjustments more easily at work, etc. I can't answer for your particular circumstances as to whether it would be beneficial - is there a hesitancy based on a worry about how a new diagnosis might overshadow or otherwise impact your current one?

There are quite a few.

Jennifer Cook O'Toole has done a lot.
There's the girl with the curly hair stuff.
There's Rosie's old ted talk, "how autism freed me to be myself"
The Spectrum Girl's Survival Guide (disclaimer, haven't read it,)
Stuff by Rudy Simone

There are a few others linked in the thread earlier by lovely people if you plough through

I read one recently by a mother and daughter and it's name is escaping me. It's on my bookshelf downstairs, will update the thread when I get down there!

@InanimateObjects what a wonderful idea! I so wish something like this had been an option for me. Secondary school was hell. I learned nothing. Some kind of distance learning would have been a godsend.

The Secret Life of Rose by Rose Smitten is the one I was trying to think of earlier!

I know I'm derailing slightly asking for all this career advice but I have more questions about working as an educational psychologist for an LEA.

Are you based in an LEA office with visits happening from there?
Do you have your own office?
Do you get (and take) a decent lunch break?
Do you work 9-5?
Is overtime expected and is it paid?
Do you take work home?
Any idea how the LGPS compares with the Teachers' Pension scheme which is what I'm currently in?

Thanks! Trying to weigh up the pros and cons.

@Spring78Mermaid That sounds very similar to my daughter. The music in episodes really affect her. Some she won’t watch due to the music being too sad. She also watches from as far away from the tv as possible. Even as a toddler she wouldn’t let me sing some nursery rhymes as they were too sad. She’s 6 in a couple of months.

My main concern is helping her manage her emotions as it all feels
overwhelming for her sometimes.

@ReddishBrown talking it through helps my DD but everyone is different. I told school when she was aged6 I thought she had a high level of autistic traits..I was literally laughed at by them as “over concerned mum”… so I ignored them and parented as if she was until she started to refuse school aged 8-9, so we got a formal diagnosis aged 10. Sadly this is all too common for girls to mask under the school radar as she was a sit in toilets and cry or go mute child, not a hurl the chair across the room ‘boy’.
The book mentioned above may help her as it’s simply written my DD related a lot to it ‘The Secret Life of Rose by Rose Smitten’

Hello, I think you might have missed my question (which is understandable as this thread has been so busy). I have a nearly-4 year old who is non-verbal and doesn’t follow instructions. She has speech therapy, but it’s not having any impact. Occupational therapy is due to start and an EHCP has just been finalised. What else can I do? Is there something I’m missing? I’m so so worried.
Thanks.

Hi OP,

I hope you'll tolerate another question-clump veering a little off topic. It's not very crisply expressed. Sorry! I do appreciate the thread very much, it is a useful thinking space where there is often a lot of vitriol.

You say 'most young children with learning difficulties are not autistic.' I think by 'learning difficulties' in this instance you mean IQ under 70, intellectual/academic disability - am I correct?

I am surprised a little by your terminology because 'learning difficulties' seems to be generally understood in the UK to mean specific things like dyslexia, dyspraxia etc where the general understanding is that the person is perfectly clever/capable but needs support in specific areas.

In any case I want a way of describing and discussing the IQ under 70 group for the rest of the question and I'll use Learning Disability (LD).

We have a DC diagnosed with 'Learning/Academic Disability/Dificulties'. (We were told she was not autistic, and that it was unnecessary to assess her to find out as her IQ is so low that is the only relevant factor. Her profile on the WISC was fairly level so it is probably a 'valid' IQ score ie not skewed by being averaged.) We tend to say 'Learning Disability' because out of that rather confusing diagnosis it is the most readily understood phrase.

However, most people are confused when we say our DC has a Learning Disability, and ask lots of follow up questions like 'disabled how?', 'what does that mean?', 'is she autistic?'. It just isn't very helpful as a descriptor or as a means of accessing services. We have never found a support group for parents of children with 'just' LD, though there are lots for parents of kids with autism or Downs Syndrome that might co-occur with learning disabilities. We have never met a child or adult with the same diagnosis as DC. This is very isolating, and quite surprising to me if it is in fact more common to have a LD just on its own, without autism.

I'd love to understand more about how you, as an EP, understand 'Learning Disability'. If most children with Learning Disability are not autistic, does that mean that there is a sizeable cohort who can only be described as 'Learning Disabled'? Or do they tend to have other co-morbidities, just not autism very often? Do you see any evidence of support/organisation/representation for this cohort and can you point me in the direction of any relevant support networks? Do you think it is important or beneficial to maintain that difference in description between what is commonly understood by 'learning difficulties' and words to describe the group with very low IQ?

I'm also interested in your opinion about the idea that DC's low IQ is the most salient factor, and whether or not autism is present is irrelevant. (It perhaps changes the picture to know that I have other DCs who have since been referred (in a different LA) for autism screening and I have strong suspicions about myself and DP (45 and 47 on the Cambridge AQ test!!).)

Thank you!!

Thank you @AutismProf for this wonderful thread.

I am autistic (diagnosed aged 50) and have a DS (19) who I think is also autistic - he agrees it's likely but doesn't want to be assessed.

Your DS's story really resonates with me. My DS is clever and got through school pretty well although he struggled during covid. Nevertheless he did A levels and is in his first year at uni, where he seemed to be doing ok. He texted last night (doesn't do the phone) saying he's going to fail and is in a mess and could I come and pick him up. He is usually determined to handle things alone and never reaches out for help so I am worried, although he did sit this morning's exam I think and I am going to get him tomorrow. I am worried that like your son (apologies if I have misunderstood his story btw) he is getting to the end of his ability to manage and a crisis that has been building up for years might be on the horizon.

My questions are: what, if anything, might have helped your DS to avoid his breakdown? (Again apologies if the comparison is inappropriate.)

And I love the idea that ND people should choose a life that suits them rather than measuring themselves against NT norms, but how do I help my DS to figure out what his best life looks like? At his age I just fell into things and made some really dumb decisions in hindsight. He is always keen to do the "right thing" by other people's standards, and not be seen as failing in any way. He has good friends at uni and the only thing he cares about is living with them next year as planned - he doesn't care whether he retakes his first year or swaps to another subject and starts again as long as he stays in his uni town. When I told him there were a few courses with places available that might suit him, he said "whatever I'm doing I'll be fine with as long as I have my mates". I feel like this is not the best approach to uni! but just want him to be happy. Any advice as to how I can help him would be really welcome.

Thanks again for the AMA, I have read a lot of very dispiriting threads about autism on MN but yours is an absolute beacon of clarity and kindness. Definitely should be in classics as an excellent resource.

👋 hi OP I know you’ve been really busy on here. Been interesting to read! I think you may have missed my question back on page (3?) I think?

Sorry page 7 😆🤦🏻‍♀️!!

The use of learning disabilities is more common in health, and difficulties in education. Force of habit on my part; but you aren't quite correct in your division of the terms, at least in how I understand then. Difficulties is a descriptor and disabilities a diagnosis, is the main difference from my point of view.

In EP world, general learning difficulties would begin one standard deviation from the mean (in IQ terms, below 85) and be really significant 2 std devs from the mean (below 70, as you say, lowest 2 percent in other words).

The distinction you are querying between general learning difficulties and specific learning difficulties could just as easily be general learning disabilities and specific learning disabilities. It's the general vs specific that identifies whether this is a problem with, as you put it, generally low IQ - I would prefer to say general learning delay, vs specific issues such as dyslexia, DCD (dyspraxia) etc. You can also hear general developmental delay, if everything is going in the typical order, but just more slowly.

It's a really interest point you raise about general learning difficulties being a bit of a Cinderella condition. We know "moderate" LD are often inherited and I guess maybe there's a parental cohort who often aren't in a position to advocate. In service terms though, you should access the learning disabilities teams (nurses, health visitors, social workers) and specialist settings should certainly be familiar with GLD.

By definition 15 percent of the population has some degree of LD and 5 or so percent are significantly impacted by their GLD, so I am really surprised and sad to hear you are struggling to find a community.

Autism being present or not is certainly not irrelevant. We have to work out of someone's social and interactive skills are delayed because their overall development is delayed, or whether their social and interactive skills are progressing in a different way from the typical, even given their overall delay.

I find that last reply interesting @AutismProf because DD1 was diagnosed with GDD at 3, Moderate Learning Disability at 5, and for the next 10 years ASD was 'mentioned' by the (ASD specialist) Paediatrician in an off-hand 'maybe, maybe not.... Does it matter?' way. It was only at 15, once she developed an eating disorder that I insisted on referral for ASD assessment and she was finally diagnosed.

@AngryPurpleSleepingBag I can see where you're going. I definitely wish I'd trained as an Ed psych younger on. Much better pay scale and profession I think.

I am now in my 40s and wouldn't manage fully time training unfortunately or I'd have jumped at the chance. Instead I'm on a lower than teacher salary part time role!

What I'm saying is that her MLD dx was accepted as the root of her difficulties (alongside her brain malformation) and they weren't bothered about the social gulf that was becoming rapidly evident even between her and her MLD peers.

Hi @Lougle, really interesting that you've had a similar experience in terms of diagnosis - we also started with GDD and then moved to LD. Our original paediatrician was highly dismissive of ASD but all other professionals have been mentioning it for years... Our DC's school is trying to organise a referral at the moment to request assessment for ASD, but they are treating her as if there is ASD in terms of strategies. We recently attended an ASD parents' support group for the first time (perhaps we were imposters?) and found a lot of common experience. I do feel though that a diagnosis of GDD/LD often seems to lead to an attitude of 'well of course she can't do x... shrug' rather than 'let's see what we can try to enable her to do x.'

I'm curious - I remember your name from the special needs boards and I always got the sense your DC had ASD - but did you ever find community/support groups on the basis of 'just' the GDD/LD in the days before the ASD diagnosis?

@AutismProf thanks very much for the out of sequence reply. I appreciate all of your efforts with answers here! I'm encouraged too, to hear another professional saying that ASD is not irrelevant in cases like DC's. That is an interesting point about heritability of LD - no one ever mentioned to us that LD was heritable outside of specific named conditions. (Though, I think that can't be what has happened in DC's case as neither DP nor I have a general LD. There is dyslexia and ADHD in the family, and probably ASD...) I can well imagine, though, that a parent with moderate learning disabilities could feel utterly overwhelmed by just managing to use the correct terms - or the terms that will be understood - to describe a DC with LD - I often do and I have studied at postgrad level. I don't think I have ever met anyone from any learning disabilities team, and the specialist settings since we moved LA have just said 'how come no ASD diagnosis?' When they have run parents' coffee mornings etc., everyone else seems to be a parent of a kid with ASD...