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!

Do you think people (mainly women) diagnosed with bpd are often misdiagnosed and often have undiagnosed autism instead.

Well, in theory, it's the NT gang who are empathic and flexible so should be able to adjust their communication style more easily than the person with the communication "disorder"!

I say, in theory, because so many people on Mumsnet seem incredibly judgemental about autistic people doing things autistically. It's often interpreted as "being a dick" because the intent behind the behaviour is misunderstood. There's a thread running right now about a man who shouted and swore when his grandson fell down the stairs, 90 percent of respondents think he's an abusive bully. To me, that interpretation makes no logical sense and it was clearly a panic reaction.

I suppose I can see that my son doesn't have an abusive bone in his body, and it breaks my heart to think that people might think of him with such vitriolic interpretations of his behaviour.

Yup!

Though hopefully this will lessen in future

And actually mental health conditions can be a consequence of the stress of being /feeling misunderstood and shamed for social "errors" - again this is more likely if you are autistic and undiagnosed.

Autism isn't a set of behaviours, so the answer is, all and none.

Autism is a core difference at brain level. People who are autistic experience the sensory world differently, they have differences in the way they process the world, monotropism (single track deep attention, driven by areas of high interest) and (sometimes quite subtle) differences in their social communication and interaction. This manifests in behaviours which may give clues as to the underlying neurotype, but there's no one behaviour that is diagnostic or excludes diagnosis.

Great question! And no - I don't know of any. I think you have spotted a gap in the market.

I will get on to my network and get back to you if I find out anything useful.

Thank you, I’ve been told that a private diagnosis also Means private titration, prescriptions and checkups for at least 5 years as she is only 8. The NHS won’t take her care back. Financially it’s out of reach. Also do private diagnosis not require school based evidence? The ones I’ve looked at do.

Ummm I think that's a mistake personally. Obviously we should not be trying to force autistic people to mask and act like NTs, but my DS (who is autistic and has ADHD) really benefited from social skills support (perhaps this is a better focus that "training") from both me, CAMHS and his school. He was able to learn the rules that NTs pick up naturally without being taught. He went from having no friends at all and not coping at at school and having an absolutely miserable time, to having a good group of friends and doing well at school (there were other interventions that helped with this of course), but being able to have some chance of navigating the complex world of teenage communication made his life so much better (he says this himself, this isn't just coming from me!). As a adult he has a good social life and is married! Not teaching autistic people social skills is like sending someone off to Japan and expecting them to be able to speak to people, and read the road signs! Bottom line is, we live in an NT world whether we like it or not. Obviously in an ideal world everyone would accept everyone else along with their quirks and their nuances, and treat everyone the same but that's just not reality. We can try and move society towards being more accepting of difference but society moves at an incredibly slow pace so that doesn't help ND people now. Especially when it comes to friendships - people want those to be easy. They don't want to make an effort (and that's not a criticism - people have busy lives, they don't need to have to work to form friendships also!). And TBH I can't see that ever changing - people either like people or they don't, and people naturally "avoid' people who feel odd or different to them. I am ND also - I was severely bullied throughout school and have a serious MH condition as a result and still have difficulty trusting people enough to form/maintain friendships now. I wish I had had some social skills support in school, it could have made a huge difference to me - I used to see my DS running into social situations making all the mistakes that I did (I used to think - that's exactly how I was! It was quite eye-opening!); he's in a very different place to me now as he had support and was able to learn the skills (or social language if you like) that no-one ever taught me. Just wanted to provide an alternate perspective as my DS's experience of social skills support which was very positive (i fact, it was life-changing) and led to a huge improvement in his MH , which is very different to your perspective.....perhaps it depends partly on the way it's done.....

@AutismProf
I always click on these threads with more than a little trepidation.
Thank you. You've restored my faith in at least part of humanity.
The world needs more like you.
For what it's worth, from personal experience fulfilling relationships can be found. I am very happily married to a NT and we have a lovely life.

I don't think it's as simple as that.

Historically, all the expectation has been on the autistic person to learn how to "pass". Despite the idea that autistic people have core "deficits" in social communication and interaction. Seems a tad unfair to expect them to do all the adjusting.

I think the pendulum is just swinging back a bit to say, "hang on, why is your way valid and my way invalid"? Not all autistic people can mask, either.

My own view is that partnership of any type requires give and take on both sides. Not all one way, either way.

I guess it's the difference between putting a person in a wheelchair and an able bodied person in the same house. There's no point getting angry with the person in the wheelchair for not being able to reach the kitchen worktops or get in and out of the bath unaided. If you do get angry about that, you'll just be angry all the time. On the other hand, if all the worktops are lowered, the able bodied person might get backache from leaning down. So let's have an accessible section and a full height section, or use a chair when chopping. But getting angry at a person for a core aspect of their difference, which is neither their fault nor their choice, seems like a waste of energy. Autistic people don't choose to have social communication and interaction differences, or differences with flexibility of thought.

Op, your title irked me as I don't believe anyone can be an 'autism expert' but I'm glad I read on, and I just want to thank you for your well thought out and measured replies

@slithytoveisascientist
When you're talking about medication and titration are you talking ADHD diagnosis?
There is no medication for autism. In terms of private assessment, you don't always need the school's input. If they will fill in the form, and it doesn't have much evidence in it, then they do take that into account, but they also take the parents' account and the diagnostic interview into account too.

@DuranNotSpandeau I'm
Consulting on a book just like this at the moment. Happy to send you a link once it's published!

The MN hive mind seems to think almost any behaviour is abuse, I don't think this is actually reflective of views irl.....

Having said that, I'm not sure NTs are actually that empathic in reality - a lot of them seem quite self-focussed, limited in their view/life experience, and like anyone, view people through the lens of their life experience. Many NTs also seem to think that if they can do something easily, they don't understand why others also can't. they seem to struggle to put themselves in the mind of an ND person....which I can understand to some extent - I can't imagine what it would be like to be NT (although I have lots of conversations with my NT husband about this as I find it fascinating!!).

People that have experienced lots of difficulty in their lives, whether NT or ND, seem to be more empathic and less judgemental ime (but that's a generalisation that obviously doesn't always apply).

Do you think 'everybody has autistic traits' and everybody's on a spectrum with only those who have them worst being classed as autistic? Or is it more that some people are neurotypical / normal and others are neurodivergent / autistic / odd. Do you think these terms are helpful or might there be a better way of labelling people, if indeed labels are necessary?

Who said?

I'd be inclined to ring the pathway and have a chat with someone. We would expect to see evidence of differences, but not "deficits" and "impairments" per se, esp in a girl, esp at primary age.

That's why I put it in inverted commas! Thanks for the endorsement though, much appreciated.

Do you think that modern society is contributing or even causing? As in current education expectations, food choices, socialising trends or anything else... Would it be / is it as prevalent in more 'simple' societies of natural food, strong communities and predefined social / labour roles etc? Sorry, so many questions...!!

My son's paediatrician refuses to believe he is autistic as he has 'good' eye contact. From what I have read this is not necessarily a definite trait. His ADOS was inconclusive as it was during covid and everyone wore masks and they didn't score it in the traditional way but just wrote down observations. We've been going through the system for 4 years now and I'm so tired and at a lose with what to do. What's your opinion on the eye contact situation?

Suspect there's a generational line of autism through our family.

Grandchildren (3 dgc - mum has autism) are strongly suspected of having autism - no diagnoses as yet but two out of three have global development delay (non verbal boys), the girl is obviously masking.

School are preparing EHCPs in the case of the boys but not for the girl as she 'copes', however her behaviour is worse at home than in school and, vice versa, the boys' behaviour is worse in school.

Should we pursue diagnoses for all three?

It seems that our granddaughter gets zero in terms of support as her 'issues' are contained within the home.

How do we get a diagnosis?

Now I've waffled on (one of my skills :-s), can I actually ask a question!

What you have said above is interesting. I have inattentive-type ADHD. It's been diagnosed and I have very clear symptoms that indicate this.

My son is autistic and has ADHD and we have loads and loads of ADHD and autism in the family. Interestingly, I do genealogy and recently spoke to a newly found hird cousin on the ND branch of my tree, and she had ADHD, her son had ASC and ADHD and another cousin she'd spoken to also had ADHD! Anyhow, I digress!

What you've said above is interesting. I definitely have ADHD but also have loads of autistic "traits" - periodically I do an online test (the AQ test?) and I ALWAYS come out as borderline. Is it worth taking this further to an assessment, or is it pretty clear that I am not autistic if I am not meeting the AQ test "level".

I also thought that autism was diagnosed based on a triad of impairments? Has that changed?:

 Communication — the ability to express oneself, both verbally (what we say) and nonverbally (our facial expressions, our ‘body language’).  Social Interaction — the ability to interact appropriately with other people, including interest in other people’s ideas and experiences, and the ability to empathise (understand) other people’s feelings.  Imagination — the ability to think and behave flexibly and creatively, including tolerance of change, imaginative play and adaptive responses to situations.

The thing that always gives me pause is how much like my DS I am (and a friend of mine who works with SEN children also said that she thought I was autistic). I've always struggled socially but I do like socialising but prefer 121. I often need a decompress from too much socialising especially in a group. However, I don't do routine - I get very quickly bored with and struggle to maintain routines (ADHD :-)). I quite like change (thanks newness and novelty :-)) but I am also not spontaneous and changes to plans can really throw me. I need a bit of time to adjust to a change to a plan, it can make me anxious. I like to plan (even though I find that difficult) and know what is happening and I don't like surprises as they don't often meet my specific expectations! I don't have one special interest (my DS has multiple but most have been lifelong) but do get very into topics or interests for a varying period of time, and I often don't want to do or talk about much else when I do :-s There's so much cross-over of "symptoms" and conflicts where ADHD is also present, so how do you tell?!? Not asking for a internet diagnosis (:-)), just wondering whether it's worth pursuing an assessment or not.....

Sorry for the long waffly message!

Yes they don't choose to have those differences but those differences undoubtedly impact on those around them. And when there's no insight into those differences by the autistic partner it's very difficult to meet in the middle because they literally can't see the deficits.

I'm optimistic things will be better for the younger generation coming through in terms of self-awareness although I am concerned that many are living virtual lives in online echo chambers and therefore find the real world increasingly baffling and hostile. Because online everyone is telling them to be 'authentic' and not mask but then real life is like driving into a wall of rejection. (And thus an incel and / or trans identity is born!)

How genetic is autism? Are there autism children with no autism at all in the family? All the autistic children I know have a close relative who is also autistic but wasn't sure if it was an established link?

Have you looked at the year 6 SATs reading test OP? I only ask, because having just read all three texts and then looked at the questions, there are a number of questions which rely on inferencing.
To me this sums up just how categorically wrong are educational system is for anyone who is ND. I guess my question is, do you think we'll ever get to the point where education stops being so bloody narrow?
Also you say you think it's as many as 1 in 30 children are autistic, but in the US the figures are higher. Do you think we're still missing a number of the 'quietly autistic' kids ie because there is no behaviour issue they don't get picked up? They are just left to struggle, until it reaches crisis point in late teens or into adulthood when the masking can no longer be sustained.

DD (17) is seriously I'll with anorexia (8 times hospitalised in a year and now an inpatient in a specialist unit). She's now been referred to the ASD pathway - I understand a really high proportion of anorexic girls are autistic. The question is, how can/should we adapt our care for her so she is less distressed, in the hope that making life easier for her will mean she is less likely to starve/restrict as a coping mechanism? Thanks for any advice you can give.

I broadly agree with you hence my post upthread. It's all well and good telling people not to mask or learn social skills, but if that means you are not accepted by wider society then that can be isolating and potentially terrible for the autistic person. I have ADHD and spend my work day masking and covering up my executive function deficits (no-one knows!). It is exhausting, but means I have a job and money coming in. And I quite like my job. I get good feedback at work. And am generally liked by my colleagues. If I let all the ADHD out, I'm fairly sure they'd find a reason to get rid of me! They are a pretty good workplace but not many employers like people who interrupt, blurt out inappropriate things, take over meetings, are late all the time, miss deadlines, spend huge parts of the day unable to focus or concentrate and can't organise themselves.

People, whoever they are, need to try to develop the skills they need to be able to get on as best they can in the world we have. Not for the world's benefit, but for their benefit.