Page 10 | I am an "autism expert". Ask me anything.

AutismProf · 2023-05-18T20:18:27+00:00

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!

SwanOfTuonela · 21/05/2023 21:55

AutismProf · 21/05/2023 13:30

I am sure this must happen not infrequently and that the adult assessors must have ways around it. I am sorry that I can't be more specific but I don't work in adult diagnosis. I wonder if someone who does, or has been through it, might be able to help?

We certainly wouldn't refuse to assess someone because their parent had died or was no longer in their life. We'd find ways round it.

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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.

SusiePevensie · 21/05/2023 18:04

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

lonesomeBiscuit · 21/05/2023 16:47

AutismProf · 20/05/2023 13:00

Didn't mean to imply ALL autistic students struggle with essay based subjects. (I know an autistic young person just finishing a history degree).
However, when they do this is often attributed to processing speed.

Of course processing speed can be a factor but no one otherwise of mainstream or able cognitively has processing is so slow that they can write a quarter or an eighth of the expected amount. If this was the case they would need delivery at very slow speed too, but most of this cohort cope fine with understanding the knowledge - it's getting it out on paper that's the problem. This is much more likely to do with communication load - giving an opinion or a justification or discussing motivation of a character is higher "risk" than a short correct answer. It triggers anxiety and a freeze response.

Add in issues with executive functioning around task initiation, any ambiguity in the purpose of the task, where marks are assigned, slow motor speed of writing etc and it adds up to a significant impact on ability to produce results in a short time frame, such as under exam conditions.

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?

QNC975 · 21/05/2023 16:19

AngryPurpleSleepingBag · 21/05/2023 15:29

Thank you! So if the second and third year placement salaries are enough to live off this might be a possibility for me. Can I please ask some more questions?

Whats your work life balance like?
Do you work in one place or are you out visiting families and schools a lot?
Do you work in school holidays?
What is the emotional impact on you of the work you do?
Do you feel you are generally able to get children the help they need or do you get frustrated by the system you’re working in?

thanks!

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!

AngryPurpleSleepingBag · 21/05/2023 15:29

Thank you! So if the second and third year placement salaries are enough to live off this might be a possibility for me. Can I please ask some more questions?

Whats your work life balance like?
Do you work in one place or are you out visiting families and schools a lot?
Do you work in school holidays?
What is the emotional impact on you of the work you do?
Do you feel you are generally able to get children the help they need or do you get frustrated by the system you’re working in?

thanks!

AriannasGuitarCase · 21/05/2023 14:45

@Cheesybiscuitsmineallmine I was diagnosed in my 40s without any parental involvement. I had written down a lot of childhood/teenage memories of things I had done or felt and things that my parents or other people had said to me that I thought could be relevant. That ended up being enough for the pyschologist

hiredandsqueak · 21/05/2023 13:43

@AutismProf Dd was dx'd at just two through a multidisciplinary assessment that included 6 weeks at the CDC nursery. She is and always has been passive and very compliant (she seemingly cannot refuse even if it goes against every fibre of her being) When in mainstream her needs were largely unrecognised despite the EHCP, a move to independent specialist where they tried to enable her to have her voice but even now at 20 she will comply always regardless of how minor it would be if she did otherwise. I remember her saying as a tot "Always obey signs and Mummy" I had no idea that it was to be the signature to her life. Do you have any ideas? Her older brother has a more classic presentation and was always more for non compliance and I probably find that easier if I'm honest.

Original poster

AutismProf · 21/05/2023 13:30

Cheesybiscuitsmineallmine · 18/05/2023 22:40

Thank you for this thread. I was wondering about what you said earlier about parents being asked about traits in childhood if the parents are still around. If someone is thinking about getting a diagnosis as an adult and their parents are no longer around, would that affect things? Do you know what kind of things they ask about childhood/childhood traits?

I am sure this must happen not infrequently and that the adult assessors must have ways around it. I am sorry that I can't be more specific but I don't work in adult diagnosis. I wonder if someone who does, or has been through it, might be able to help?

We certainly wouldn't refuse to assess someone because their parent had died or was no longer in their life. We'd find ways round it.

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Spring78Mermaid · 21/05/2023 13:28

@ReddishBrown my DD was assessed as autistic aged 10 and has that hyper sensitivity to emotions you have mentioned. She struggled to watch any films which all have emotion’s manipulated by music / images etc as they are hugely overloading and she struggles to see between fiction & real life off the screen, she has a pathological fear of a particular cartoon ~ we can’t even mention it’s name in our home or she gets upset. However as she’s got older it’s got easier that she’s watching more stuff now to help her learn and decode the emotional people world around her so she can mask/fit in/understand relationships better especially in secondary school. None of it is instinctive though & she questions everything as part of her learning process. It’s utterly exhausting to be her, and to parent yet repeatedly I get told “she’s not That autistic..” the daily meltdowns would show otherwise.

Original poster

AutismProf · 21/05/2023 13:26

Climbles · 18/05/2023 22:30

How would you define Autism?
Do you think the ADOS is an adequate assessment of Autism?

I have defined autism elsewhere in the thread so will focus on the second part of your question.

The ados is the best tool we currently have, but it isn't always great. It's really not good for identifying internalizing (often female type) autism. It's rubbish for working with children who have co-occurring selective mutism or severe stranger inhibition (very very shy). It's not great for young children who are verbal, because the second half of the 'beyond phrase speech' module asks conceptual questions about friendships and relationships that would be challenging for any 4 or 5 year old, and then conversely expects the assessee to play with toys, which is deeply uncool if you are, say, a 15 year old.

I personally prefer close school observation in a naturalistic social situation, and one on one work, but that might be because the educational world is my comfort zone.

The ados is very good at looking at how children cope when the social scaffolding we all do is stripped away. That can feel quite uncomfortable, especially to parents watching their child struggle, but it's often very informative (as long as you are male and between 3-13 or classically autistic and doing a module 1 or 2!)

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Original poster

AutismProf · 21/05/2023 13:17

ReddishBrown · 18/05/2023 22:24

Question 2: What is your opinion on helping manage some autistic symptoms with supplements?

Unlikely to do harm, but I am skeptical.

Depending on what you mean by symptoms - do you mean core symptoms (triad) or frequent associations (eg gut issues)? I think taking a probiotic and vitamins is probably useful for most people, but since autistic people are less likely to eat a full and varied diet, it's probably a good idea.

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Original poster

AutismProf · 21/05/2023 13:14

Reddish brown
I mean possibly....if she needs to work out explicitly what each nuance of social communication means....it's like it's not innate, and she doesn't understand if they are upset with her or not? Most people would have near automaticity in understanding that I assume? But it's subtle, so I am not sure, without seeing her myself, what a diagnostic team might make of her.

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ReddishBrown · 21/05/2023 12:14

AutismProf · 21/05/2023 11:03

Tricky question.
Autism boils down to social communication differences. You can be emotional and cry at the drop of a hat, but not experience any difficulties in friendships, the peer group etc.

to be autistic, you need to show heightened interest in a particular area and derive great comfort from it. With girls, the common subjects are often mainstream, but may be askew with the peer group. English literature, horses or animals in general, soap operas, makeup are common ones along with the more "obvious" manga/anime/Pokémon.

What do you mean by "hyperaware of social interactions"? I had a very bubbly friend once who I now suspect is autistic, but masks brilliantly. She is a social butterfly, very popular, but drinks a great deal to cope, and inevitably ruminates on her "performance" socially, so very often the next day, or a day or two later, you'll get a text apologising and saying she didn't mean anything bad when she said X (where X is inevitably completely benign and it hadn't occurred to me to take offence). Her two kids are autistic.

This is a bit of a non answer, sorry!

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By hyper aware of social interactions I mean that she is very sensitive to vibes, tones of voice, choice of words etc. She’ll often ask questions about why someone’s voice is different, why they’re grumpy, if it’s about her or something else. Really trying to figure out all the nuances of social interactions.

She absolutely cannot bear anyone being upset. To the point of almost a phobia. She is also very sensitive to TV and won’t won’t watch certain episodes due to them being a bit melancholic. This will make her too upset because she’s so aware of the emotions in that episode. Not anything major, just a cartoon.

This is so different to my other child who is sensitive but not so much around social interactions.

Original poster

AutismProf · 21/05/2023 12:12

Apols, my misreading. Ignore me.

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Original poster

AutismProf · 21/05/2023 12:11

@Spendonsend
Didn't you say he was non verbal? How would he answer questions?

Sounds like he was assessed on the WISC.

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Spendonsend · 21/05/2023 11:57

AutismProf · 21/05/2023 11:15

How did the old ed psych report assess learning difficulties?

I would be requesting a reassessment as either there are no learning difficulties and something has gone badly wrong in your son's education, or in fact there are learning difficulties and that original report was incorrect, and your son has unfair expectations on him.

If he developed until age 7 at a standard pace and then stopped, I would want a medical opinion. Does he for example have epilepsy? Though he wouldn't have seen an EP if there weren't already problems of one sort or another when he was 7, surely?

A bit of a conundrum, but no, it's not common to "just stop developing"!

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Thank you.

I think i might ask for another ed psych report based on that. I wasnt present for the first but i think he had to solve some shape puzzles and answer some questions like how are a horse and cow similar.
The test began with a W and the result said he had a spiky profile within a normal range.
But that does seem to have translated to learning.

Original poster

AutismProf · 21/05/2023 11:15

Spendonsend · 18/05/2023 22:24

This is very specific but my son has autism and is verbal. He had an ed psych assessment, aged 7, which said he had no learning difficulties. But he cant seem to learn anything new. He got to year 2, when the assessment was done and has made no progress with reading, writing or maths since. He is now 13. (Special school, 1 to 1 support) He has learned a lot of gardening skills and to play ukulele

What is it in autism that seems to affect learning, when there is apparently no learning difficulty. It seems common to just stop developing.

How did the old ed psych report assess learning difficulties?

I would be requesting a reassessment as either there are no learning difficulties and something has gone badly wrong in your son's education, or in fact there are learning difficulties and that original report was incorrect, and your son has unfair expectations on him.

If he developed until age 7 at a standard pace and then stopped, I would want a medical opinion. Does he for example have epilepsy? Though he wouldn't have seen an EP if there weren't already problems of one sort or another when he was 7, surely?

A bit of a conundrum, but no, it's not common to "just stop developing"!

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Original poster

AutismProf · 21/05/2023 11:03

ReddishBrown · 18/05/2023 22:23

What, in your opinion, is the difference in being a highly sensitive/deeply feeling girl, and an autistic girl? Are they the same, is there a vent diagram overlap? Google doesn’t seem to know.

For example, a girl who struggles a lot with textures, sounds, hyper aware of emotions and social interactions, very sensitive to the entire world etc.

Tricky question.
Autism boils down to social communication differences. You can be emotional and cry at the drop of a hat, but not experience any difficulties in friendships, the peer group etc.

to be autistic, you need to show heightened interest in a particular area and derive great comfort from it. With girls, the common subjects are often mainstream, but may be askew with the peer group. English literature, horses or animals in general, soap operas, makeup are common ones along with the more "obvious" manga/anime/Pokémon.

What do you mean by "hyperaware of social interactions"? I had a very bubbly friend once who I now suspect is autistic, but masks brilliantly. She is a social butterfly, very popular, but drinks a great deal to cope, and inevitably ruminates on her "performance" socially, so very often the next day, or a day or two later, you'll get a text apologising and saying she didn't mean anything bad when she said X (where X is inevitably completely benign and it hadn't occurred to me to take offence). Her two kids are autistic.

This is a bit of a non answer, sorry!

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Original poster

AutismProf · 21/05/2023 10:47

Frances0911 · 18/05/2023 22:20

My father is 81 and autistic. He is very challenging, but looking back on the past, he has been taken advantage off and bullied by people, his whole life.

Ah. My father also.
These people out there who "don't believe in labels" have obviously not seen the people in tatters from a life of misunderstanding and being misunderstood.

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Original poster

AutismProf · 21/05/2023 10:45

GoodAsHell · 18/05/2023 22:21

I'm at breaking point with my teenage daughter, non verbal, autism, learning disabilities. Since lockdown her world has become so so small. She only wants to lie on the sofa. Even getting her to go to the kitchen is a major battle. She is triggered by noise, dog barking, young children crying - will be aggressive towards both. Scared to take her out in case she hurts someone. Ear defenders don't help. We used to take her everywhere now can take her nowhere. No one seems to have any idea how to tackle this. Any suggestions?

Bless her. What help do you have at present? I assume she has an EHCP? Have you had an emergency review, with TAC meeting?

Essentially, you need to rewrite her programme of intervention to make it suitable for where she currently is, not where she used to be.

Start where she is and think about what would be the next step. She probably needs some home tuition, at a very very low expectation level initially. I have successfully used play therapists in this role. You need small amounts of time regularly - 3 half hour sessions weekly better than 1 two hour session, for example. Just get materials that she would have liked before out - playdoh, bubbles, squeezy toys, finger paints, whatever, and have the therapist play with them, inviting DD but not forcing her to join.

You need to think about her programme in relation to the preparation for adulthood areas - health, independence, community access, and education and employment. She needs a new "curriculum" or timetable based on touching each of these 4 areas in an initially very low key way over a week. For example, health and community access might be covered by going to a disability session at a soft play centre or a special needs cycling session - but the first step towards that might be, that she can sit in the garden or kitchen and listen to music/ eat a sandwich with you for 5 mins. Small steps. If she can't manage a step, make it smaller still.

You need a LA rep to support such a programme and commission a person to do the "inreach", and ideally a prof to support the recommendation - a speech therapist or EP. Who has been most helpful in the past? Contact them.
Good luck.

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LotsOfBalloons · 21/05/2023 10:33

Absolutely fab thread.

StraightOuttaContext · 21/05/2023 09:54

@MNHQ I'd love to nominate this for a mumsnet classics, because of the EXCELLENT way OP is answering these questions. She is dispelling so many misapprehensions, stereotypes and misunderstandings with kindness and with education. I'm autistic myself, and was very wary of reading this thread. I needn't have been. This should be a resource for mumsnetters to refer to when they have autism-related issues or queries. Thank you, OP.

Totally echo @tattygrl here.

Original poster

AutismProf · 21/05/2023 09:49

AngryPurpleSleepingBag · 21/05/2023 08:54

Thank you! I also find a lot of helpful information online last night. It looks like my degree wouldn’t be suitable but that it would be suitable for a conversion course so I’d be looking at a long retraining period. I think I could do the conversion Msc with the OU whilst working I think but I have 2 more questions:

while doing the doctorate training it seems a bursary is available for the first year but not necessarily for the second and third years. Would there be any flexibility to work part time during these years?
I’m almost definitely undiagnosed autistic myself (inherited Asperger type traits). Other family members are diagnosed. I work 1-1 with children in school but I struggle with classroom teaching because of sensory overload and the spontaneous social skills needed for this. Would these traits be a disadvantage in your job?

Thank you!

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This is new; second and third year trainees are now to be (temporary) employees of the service they are training in.

You do need to be able to be personable, make parents feel comfortable (most will be worried when meeting the EP), develop rapport with children, and chair meetings sometimes. If you can do those - even via masking! - then being neurodivergent shouldn't be a barrier, and could even be an advantage, but I would declare it at interview. We certainly have a couple of autistic trainees/EPs at our service.

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Oblomov23 · 21/05/2023 09:24

Interesting thread thank you. I knew exactly what you were trying to achieve with your thread title and took no offence, (as others have mentioned they did).

AngryPurpleSleepingBag · 21/05/2023 08:54

AutismProf · 20/05/2023 23:21

I am paid on Soulbury like most ed psychs. Top of scale , with 3 discretionary points for advanced practice, but without moving to management scales is 57.5k currently. I won't disclose my precise salary.

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Thank you! I also find a lot of helpful information online last night. It looks like my degree wouldn’t be suitable but that it would be suitable for a conversion course so I’d be looking at a long retraining period. I think I could do the conversion Msc with the OU whilst working I think but I have 2 more questions:

while doing the doctorate training it seems a bursary is available for the first year but not necessarily for the second and third years. Would there be any flexibility to work part time during these years?
I’m almost definitely undiagnosed autistic myself (inherited Asperger type traits). Other family members are diagnosed. I work 1-1 with children in school but I struggle with classroom teaching because of sensory overload and the spontaneous social skills needed for this. Would these traits be a disadvantage in your job?

Thank you!