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!

@Righthandman there was absolutely nothing. Nada. I spent years hanging around ASD threads saying "DD1 doesn't have ASD but I relate because....<insert blinding ASD traits>.

@AutismProf Quite a lot of what you e described as ASD behaviours sound very similar to ADHD or ADD. Especially with girls. How do you distinguish from the two?

@Lougle that’s increasingly been my experience. Before that, I was just lonely for years.

I do wonder though, it seems as if we are heading toward an eventual ASD diagnosis. But I worry about the others who must be out there somewhere for whom it really is ‘just’ LD.

Or maybe in reality it is never ‘just’ LD but always actually ASD where it isn’t Downs or Fragile X or something identifiable via genetic testing??

DD1 was in the DDD project, then 100,000 genomes. Nothing found yet despite clear differences in her MRI brain and physical markers across her body. The geneticists still say there's something to be found.

The ASD dx has been really helpful to explain why DD1 is so fixed and finds it so hard to generalise.

Meant to thank @QNC975 for answering my previous questions.

yes @LotsOfBalloons I’m mid 40s with DC and retraining would be a big deal for us all hence my questions about the work life balance and finances. It would have to work for us as a family and it would have to mean a better salary than I get now plus a better work life balance. Currently I work long hours during term time (40 contact hours plus long commutes and admin on top of that) but I have school holidays off. I can’t do much in them except sleep and do neglected life admin and recover from the term though.

Yes us too with the studies but nothing found yet. No MRI here but very small head and abnormal EEGs…

I don’t want to derail OPs thread but I wonder if I might PM you to chat more?

Sorry that was @Lougle

Apologies @AutismProf

@Righthandman why don't you join us on the Goose and Carrot thread. They're a friendly bunch! https://www.mumsnet.com/talk/special_needs_chat/4804369-goose-carrot-pub-heading-into-summer?latest=1

There is a complication in current Early Years compared to usual, which is the impact of covid lockdowns on very young children. There is quite strong evidence that babies and toddlers of lockdown have language and social interaction skills (and ability to sustain attention, interestingly) that are on average a little delayed compared with usual, especially if they were only or eldest children during lockdown, because obviously their opportunities to interact in a variety of spaces and with a variety of people were significantly diminished. Those kids, by and large, aren't autistic and we assume they will catch up socially.

For that reason, it might be worth seeing how he goes in school, if it all seems a bit borderline. On the other hand, because of the post covid boom in referrals, there are really long waiting lists more or less everywhere, so the other side of the coin might be to try to get him on a list, with the idea that you can always pull him off it if he develops well. You might decide that is the more cautious option, esp if you think you might be autistic yourself. Has he had a speech therapy referral? They might be able to consider his social communication and help guide your decision making.

You need to look up your local pathway.

Assuming your child is in school, typically the school and home will need to send in evidence to explain why they think an ?autism assessment is needed. Sometimes an Ed psych or speech therapy report is also requested. It varies.

There is also the option of private assessments as well. If you decide on this route, I would try to go via word of mouth recommendation if possible. If not, check they do ados, developmental history, and feedback so you can link back into the NHS for "aftercare" if nec.

As a parent, I feel like clothing sensory stuff isn't worth the misery of challenging. Try to get school to compromise. Cut out labels. Use seamless socks. Allow joggers instead of tailored trousers, but make them the right colour and closest possible shape, etc.

WRT behaviour...assuming she does turn out to be autistic.

Kids do well if they can. She will know that it's not ok to swear at Mum or kick out at her brother or whatever the behaviour is. It's not that she doesn't know what is expected of her. It's that, in the moment, something is stopping her from expressing her disagreement/unhappiness/ frustration in an appropriate way. Systems that use rewards and punishment assume that the missing factor is motivation. This is why I almost never use rewards and punishments, or suggest them.

What all challenging behaviour boils down to is that the child's skillset is lagging developmentally, and/or there is an expectation on them that they cannot meet. This expectation can be self-imposed or imposed by an adult. The context is also vital, for example personal resources are more limited when one is tired or has had a load of crap to put up with already that day (and that is, to be honest, the daily experience of many autistic kids in education).

So, reduce the expectations where you can, empathize with the person, acknowledge that things feel hard for her just now, and when things are calm try to come up with a plan to do things differently.

The plan A, B, C model from The Explosive Child by Ross Greene is absolutely brilliant. His website is called Lives in the Balance and includes videos outlining the key ideas above. I am a big Ross Greene fangirl :D

It would be rather brief and rhyme with "cluck off".

To be less flippant, if you have the heart and stomach to think you can actually make a difference, I would ask them

• how long have the studied neurodiversity and human brain types to lead them to this conclusion?
• Are they frightened that something is "wrong" with their family member (it's always a family member, isn't it?) Because nowadays, we have a better understanding of these are different types of brain, rather than inherently "faulty".
• Was there really nobody at their school who was "weird", a loner, picked on, unhappy? If so, maybe that person was undiagnosed neurodivergent. Did they have a nice time at school, kids like that? If not, wouldn't being "special" and seen as a bit vulnerable have helped them be happier? Did they not deserve to be happier? What did they do to deserve being called weird and ostracised socially? Was it really so bad?

In summary, dear relative, what are the risks if you are wrong?

1. This is rare, but not unknown, in females more commonly. I guess it's either a misdiagnosis and he was never autistic, or he's achieved doctorate level masking that becomes second nature and perhaps is no longer experienced as draining in the way most autistic people describe?

1. People formerly diagnosed with Asperger's do retain that diagnosis, though since Asperger's was always recognised as a form of autism, many have now switched over to saying autistic. In our experience we often have to direct people to the "Asperger's" literature, which hasn't yet fully caught up.

@AutismProf
thank you
? How common is misdiagnosis ? Not very I hope :)

I am not sure tbh.
Hopefully not very common. I suspect we miss more than we overdiagnose?

It is a judgement though, so mistakes are certainly possible.

I think my question got missed but do you know how ADHD and autism is different? A lot of what you say sounds very much like ADHD.

Did I already answer this? I can't remember!

Your child needs to show significant signs and some of these can be not shown in one context but reported in another (eg "masks" at school but at home expressed sincerely that she cannot stand the noise in the dining room, that it makes her head buzz, and she hates school).
Deficits is too specific as sometimes they are too much rather than not enough...eg a child doing their homework over and over until they declare it is perfect - that's a sign, but not a deficit. Or a child who had an encyclopedic knowledge of microbiology at the age of 8. That's a sign, not a deficit.

Our referral forms direct schools to consider specific issues with leading questions about friendships etc so it might be the same in your area?

@LotsOfBalloons you may find, if you investigate, that parental referrals are accepted/considered, but they don't make it widely known....

Why would you consider yourself an expert? 20+ years gives you experience but an expert?

Giggly, it's in inverted commas for a reason....see items 3, 4 and 5 on the common usage chart below :)

I haven't missed you, I am still answering questions from page 5 - with the occasional foray out, but I am trying to be fair.

Can you be more specific in what you are saying? I assume you are talking about executive functioning issues, which happen in ADHD and autism? (And DCD, and dyslexia....and attachment and trauma....)

Ah sorry! Thanks so much for answering. I'm not sure if this is executive function, but things like getting angry quickly, struggling with essay subjects in the way you described, either being late or early, forgetting to contact people, seeing things in extremes eg I've messed up, no point trying again. I could go on and on. She has no special interests and no problems with socialising and never has, she doesn't hit many of the classic autism markers but so many times I read threads about autism and I think, that's like DD. But equally, how do you distinguish from these and normal teen angst and general apathy? She has been tested for autism 3 times now. Once on the NHS the other times private. First when she was 8, then at 13 and just now at 14 for a second opinion. Every time they've said it's ADHD inattentive type. She also has Dyslexia which is extremely severe and effected her speech. So much so she was misdiagnosed with SLI for a long time.

Well both fit under the neurodiversity umbrella and there are common features. Coocurrence is also common.

We try to look beyond behaviours to drivers of behaviours. Is this behaviour being driven by impulsivity, or misunderstanding of social rules? Is this an attention modulation issue, (often experienced by ADHDers as frustrating) or an autistic special interest "flow" (experienced by autistic people as pleasant). Get the idea? There's also a gulf where ADHD brains tend to crave novelty, whereas autistic brains more often find comfort in routine and sameness.

There are lots of venn diagrams which try to illustrate this, they are always a bit generalised but you might find them helpful? Attaching an example.

Thanks so much. Yes the Venn diagrams are quite helpful. She definitely craves novelty over sameness. What is attention modulation?

Twenty years’ experience in pretty much anything would make one an expert, no?