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!

My DS was diagnosed with autism at 18 he never had any of the symptoms but at 16 in lockdown he starting developing social anxiety. It was only after this he was diagnosed and was told the anxiety was a symptom of the autism. I know this is something that is lifelong he is doing well at University but he opted to stay at home and didn't choose the top tier university he really wanted to go to because he didn't want to go away from home. He goes to lectures but has made no friends and doesn't socialise and comes straight home from lectures. He is refusing counselling which was recommended when he was diagnosed and I am worried that he will have autistic burnout. Will it ever change that he will start to socialise or will he always be alone. I am so worried about what the future holds for him as he is so isolated. TIA

I will probably come back to this point...

Of course it's true that a sector of autistics who are more verbal are able to advocate for themselves and influence policy in a way that those without verbal language or other communication abilities can't.

I need to think through the implications of this more. What do you perceive them to be,@JenniferAllisonPhillipaSue ? Genuinely.

Sorry @AutismProf but even with that description, your experience of caring for somebody with autism is still much different to my own. Imagine the agony of trying to find out where your child is in pain when they not only cannot tell you, they cannot show you and cannot pinpoint the actual source themselves. Imagine having to go through lengthy legal procedures and huge expense to get the right to advocate for your child financially. Imagine still having to change their pooped nappies when they are teenagers with no end in sight. Imagine never hearing them speak.

I'm out. I'll leave others to enjoy the thread and may they never have to consider caring for a child with such intense support needs.

As a mam of 2 (DD 8 diagnosed ASD, DS 3 not yet diagnosed ASD but on waiting list and 100% will be diagnosed IMO) I just wanted to say thank you for dedicating the time to this thread and indeed for starting it. I was hesitant as I'm also an "expert" on autism BUT only in how it presents in my children and when I saw the title I thought oh here we go it's a bored mam thinking she knows it all when actually she's probably like me and is actually an "expert" on her child only. Thank you for proving me wrong! I've already screenshot a couple of your replies as they absolutely relate to one or both of my DC and will be helpful in enabling me to advocate for them more effectively with school etc. I understand this is likely a massive drain on your time but please don't disappear as I for one am finding this thread so helpful and I'm happy to wait for answers! I don't have a specific question myself at the moment that hasn't been covered by a PP so this really is just a thank you for giving your time opinions and experience x

I am sorry too.

I am going to investigate the issues you raise more and try to not be too defensive of my personal experience.

I don't think mild and severe are the right descriptors, but I do think the community you describe needs more consistent representation and consideration.

I have a child newly diagnosis asd and a history of extreme issues with processing and dexterity - extreme in the sense that it caused a huge amount of distress through fear of not understanding expectations and of being too slow, particularly with writing. Even now, it seems for everyone else's one side of A4 they can only muster up a quarter of a page.

A private assessment a lot time ago (before diagnosis) revealed manual dexterity issues and then a year later the same was found through the nhs. Extra time was given for exams and academic coursework which helped and I would have hoped this would be more certain after diagnosis.

But I’ve just heard that a recent EXACT assessment revealed higher than average speed and processing in all areas. However this is not what my DC is finding on the ground level, but rather it's all a huge struggle. It's better than it was but still punishingly hard.

Is there a case for still asking for extra time even though they excelled in the EXACT assessment or is it: 'Tough, welcome to academia, whether you've got autism or not?'

I have no more h left so can't approach help privately anymore and feel worried being stuck in a system I'm uncertain will be so willing to help.

It's probably not processing. This is used to explain why autistic children don't manage to write much when people don't quite know why. Handwriting can be slow but a quarter of "normal" is more complex than just processing or writing speed.

It's more usually a combination of ambiguity of question causing inhibition of responding in young people who are sensitive to risk in communication, and executive functioning issues around task initiation, planning, or perspective taking.

You can get extra time anyway if he's diagnosed as long as it's the usual way of working.

Great thread, thank you @AutismProf. DD, age 2 years 4 months, was flagged up by nursery as showing ASD signs, mainly sensory issues, occasional hand flapping (although we don't see this at home), poor interaction with peers (fine at home with her older sister) and tiptoe walking. She also shows rigid attention at times, but I'm very aware this could be due to being 2! The nursery are fantastic, and elder DD went there, so I 100% know they wouldn't have spoken to me had they not been concerned. I'm also a primary teacher, but at mainstream, so have taught a fair few children with autism, but mainly high functioning.

She isn't non verbal. Her speech isn't as good as her sister's was, but her sister's was exceptional, so she isn't a good comparison! She also required no intervention at her 2 year HV review, as her scores were fine. I'm due another meeting with nursery in a couple of weeks.

So, what I'm asking is, should I be doing anything? I find the uncertainty anxiety provoking. For now, she's such a happy girl, and it breaks my heart that she may face difficulties when older. I just don't know if I should be doing anything about it right now, or just wait and see. What would you suggest?

Thanks so much for this thread, OP, and the thoughtful and informative answers.

Thanks for the thread and your very considered answers. Someone earlier asked about things to help a girl aged 10. My DD was assessed as autistic at that age and she really related to the 4 books by Libby Scott especially “can you see me” & “Ways to be me”. I read them too before I gave them to her and thought they described a lot of my time at school many many years ago which was so insightful. I get so frustrated though by our education system they just can’t seem to flex enough for academically able autistic children so rates of burnout and anxiety are so high.

Phenomenal thread @AutismProf - thank you for starting it &your commitment to replying is laudable!

Well it's easier to diagnose classical autism earlier, but not much before 2.5 or 3 - unless there's an older sibling with a diagnosis and a clearly similar trajectory. The 2 year check is one of the early spaces where parents discuss their child's development with health visitors and initial screening is supposed to take place.

I believe there have been various studies investigating trying to bring this (earliest age) down, but the validity reduces a lot . Toddlers with significant speech delays or experiencing neglect can look similar at a very young age.

Caveat - I don't work on the early years pathway much.

I would say not always, esp in classical autism which can be associated with prematurity, learning diffs and genetic anomalies, ie not familial inheritence. But it's not infrequent in the autism-without-learning-difficulties population. As others have said on the thread, quite often a youngster's diagnosis prompts a parent to explore an autism diagnosis themselves.

Hyperlexia is not particularly common, and actually I have seen more boys than girls, but I wouldn't swear by the occurrence, it's not something I have studied.

I don't think it's very common for learning disabilities to be misdiagnosed as autism (ie there aren't actually learning disabilities) though this can occasionally happen where communication is profoundly impacted (like for the chap who wrote 'the reason I jump'). It is the case that people with learning disabilities have a greater chance of being autistic as well, so it's not uncommon in conditions such as Downs or other conditions associated with LD.

I think people outside the field don't really get how much autism diagnosis is based on balance of probabilities, evidence base, history - it's a nuanced thing, sometimes it's genuinely not that clear (and sometimes it really is very clear!). We try to get it right, there's a lot of genuine grappling and integrity in the diagnostic process in my service, but we do definitely get it wrong sometimes - in both directions.

I see what the aim is, but they are very simplistic really and no substitute for a full assessment. I am not familiar with the specific one you mentioned, but in general. I think in women especially they probably lack specificity and sensitivity - Do they publish this sort of data?

I think as an adult it's up to you whether you think having clarity about your neurotype would make a big difference to you. The diagnostic criteria, as I have said elsewhere in the thread, do include an expectation that the person's life is impacted by their "symptoms". Many diagnosed adults find it life changingly validating, others are happy to just "assume". I think it's most worrying when people have no idea they might be autistic and either have no insight into their "issues" or assume they are weird or broken in some way. For youngsters I think it's really important as I have stated elsewhere in the thread; for adults who suspect they might be and "act as if" it's probably more equivocal.

Am now just starting questions posted on page 3 so bear with me :)

I have a specialist role so I am atypical.

Assuming you are talking about the usual EP role.

Our job is to work on difficulties and improve them. We have to work within the law as laid out in the Code of Practice. (Currently on 2014 iteration but being revisited and redrafted). This requires us to work on an assess-plan-do- review cycle in interventions.

Basically a school calls us in, we assess the situation in some way (doesn't have to be a formal assessment, could be a consultation, observation, team around the child meeting, or combination). With the key stakeholders (parent, teacher, senco) we devise a plan based on our assessment. The plan is "done" and we meet again to review it, tweak it, adjust it, and so on.

We also work on training and strategy and a variety of other roles.

We have different ways of working in different areas depending on the commission model. Some local authorities have cut their EP team right back and they basically spend all their time on statutory assessment with the most serious situations. This is highly unsatisfactory for all concerned. In many areas there's a move to schools buying in EP time. Wherever we are, we only see children that someone asks us to see - in best practice the priority order is jointly constructed by setting and EP when considering all sen needs in a school at a planning meeting. We are sadly a scarce resource (about 200 train a year, aging profession etc).

@AutismProf my question was page 2, have I missed the answer?

No, sorry, I managed to miss a couple of questions, my apols.
Will get on to it in the morning!

I hope that I can get some advice / an answer too, if you have time 😊 thank you all who replied so far with book recommendations etc, really helpful x

Hotfair, you are quite a long way down the list, but very briefly:
Because your daughter has initiated the request for an assessment, this should be respected. Ask her to write a letter about what she saw in the "spark" programme that she felt was like her, and confirm that she would like to find out if she is autistic. I highly doubt that any pathway would turn down a referral generated by the young person - we certainly would not. You would obviously need to send supporting evidence also.

It's worth calling your local pathway to ask if they accept parent referrals. Many do, but don't shout about it.

EOTAS (education other than at school): if the young person has an ehcp, or is going through that process, most local authorities will go with parental preference unless there are no places available, or they are asking for something incredibly expensive or potentially harmful. Whilst an EP might make a recommendation, it's the parental preference that has a higher status if you like.

For me as an EP to recommend EOTAS - usually this would be in discussion with parent, they have to be in agreement with the plan. Usually this would be in cases where the young person's mental well-being was being so damaged by school (or usually, thoughts of school since most are in EBSA by then) that the idea of any kind of attempt at reintegration to any kind of setting - including specialist, if that were a possibility - is too traumatic. Also where the young person has a clear preference and engagement in online learning, or where parent and child clearly say it's what they want and I agree it would be appropriate.

I can't answer the camhs question, sorry, I am not involved in commissioning and don't work in camhs. I expect it boils down to overwhelm and underfunding.

Parent carer forums are often useful to find free support; ours runs various free courses for parents. Sendiass will also help you navigate having a child with SEND. The local authority Local Offer is also useful - in many areas you can sign up to a newsletter (email) which tells parents about initiatives locally.

The only ones we use as shorthand to make it clearer what we are talking about within the team are PDA and 'old Asperger's type'.
PDDNOS, semantic pragmatic disorder, those kind of old names I suspect would be subsumed under our wider understanding of manifestations of autism and the subtle but profound way some of the Triad can be expressed (eg it's common for a person to have no problem with novelty or change on a big scale, but to find mental re-evaluation or flexibility very hard, for example finding what they perceive as injustice pertaining to themselves very consuming, or find ambiguity in school work questions cause a freeze response. This would fit with the flexible thinking requirement of the spectrum, but I am not sure we'd have recognised it 20 years ago).

High functioning I don't like. It means autism without accompanying learning disabilities, not that you are a genius. And even if you are academically able, it doesn't mean you will sail through academically because of the way the curriculum works (it's application of knowledge based, rather than expression of knowledge based, which means many able autistics experience a performance deficit, not a competence deficit). It also minimises the potential challenges of being an autistic person in the modern world, which can be great, even if you are very clever.

Thank you @AutismProf, I had no idea I could refer. I found our local pathway fairly easily and can confirm they do accept parent referrals. However, I'm not sure with the school thinking she's the perfect student, that she will hit that element of the referral criteria ☹️ I will talk to the school, but think the referral may not be accepted.

As long as you can get over the doorstep - and I think a letter from DD would do that - most services are very familiar with a mismatch between school and home perceptions, esp in able primary school aged girls. In our service, we send someone from the team out to observe for themselves in school, and we know what kind of subtle signs we are looking for.