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!

What do you believe is the cause of the increase in cases? Is it just better diagnosis or other factors?

What do you think of the recent wave of adult women being diagnosed?

@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.

@hotfairballoon I was really touched by your description of your DD. I'm no expert but if I were in your shoes as a parent I would definitely seek referral. Have you chatted to the SENCo or equivalent? That's probably the first step and see how they respond. But the advanced speech can be a sign just as much as developmental delays, and the perfectionism, anxiety, restrictive eating etc are becoming much more recognised as 'red flags' in girls.

It won't help you towards a referral necessarily, but Sarah Hendrickx' book about Autism in Women and Girls has been really eye opening for me as a parent.

I agree
I've been watching this post since last night. She's excellent.

OP may I ask another, very prosiac, question?

Screen time often seems to be recommended for down-time and self-regulation for autistic DC, or they simply gravitate strongly towards it. Mine certainly do, though listening to music is also helpful for them. I suppose one advantage of screen time is that it is ubiquitous and looks pretty standard to outsiders.

But what else do you recommend to patients to fill that function? Or what good examples have patients told you about? Have you heard any accounts about what older generations did, before screen time was so readily accessible, that stood out to you? I'd like to help broaden my DC's options, so to speak.

This is tricky. As well as my two autistic kids, I have another child who falls into this area.

First off, who has said there aren't enough "traits" for a diagnosis? I would be wary of a non-expert or untrained opinion on that.

This may be controversial but it's just my opinion. It is possible to be quirky, but to find a space where actually, your life is fine. Where you can meet life's expectations without great stress, where you are fulfilled socially and emotionally, where you don't feel "weird", misunderstood, or 'alien'. The diagnostic criteria do make it clear that there should be a significant impact on the person of the features that can be observed.

With my kids, two of them absolutely definitely would not have coped in modern life without their diagnoses. The third is fine. We have discussed with them that it's possible that at some point they may need to explore the idea further. They are fully steeped in the idea of autism as a neurodivergent brain type so I don't think it would be as scary a decision for them as for some/Many if they do decide they need to pursue it further.

My thoughts on acceptance and "overcoming issues" - I think every child needs to feel loved and accepted in their family. That doesn't mean that we don't teach children how to manage big feelings, scale the size of a problem, gently challenge their anxiety. It's just that is done through discussion, modelling and education rather than assumption of ill intent or malice, shaming etc. I don't really think that's so different in autistic or non autistic kids. It relates to a question someone made earlier in the thread, which I haven't got to yet, about whether you should discipline an autistic child. My answer is, same as any child, it depends what you mean by "discipline". I firmly believe that kids almost always do well if they can.

OMG!! Squee! That nomination might be the most exciting thing that has happened to me in 20+ years in my job!

Thankyou so much - even if it doesn't go forward, you have made my year!

Absolutely deserved.

I think if the Autistic partner can articulate that as you have then there is much less of an issue, they might not even be able to recognise they are masking. I think comparing a physical disability and autism and taking OPs example from the other thread, autistic reactions ie swearing and shouting could feel like bullying or worse, where as lowering a work surface can be easily seen as that’s what the person needs to help them.

I think the problems happen in relationships when the NT person is not sure if the the behaviour is due to Autism or because the person is being unreasonable.

I have a very strong physical reaction when my son has a meltdown, a knot in my stomach and I feel sick, I know the reason for it but I still feel like that, I would not choose to be in a relationship where I frequently felt like that, whatever the reason.

I haven't RTFT so may be repeating an as yet unanswered question.

How can I help my NT child, 7, to cope with living with an autistic sibling, 5, who is treated differently? E.g. if the ND child hits, breaks things, screams, I try to respond with calm and give them lots of attention and love; if my NT child did those same things they know the consequences would be very different. Similarly my ND child often hurts their sibling or does things to make them uncomfortable; while I always break this up there is still an element of my NT child not having final say over their body and how it is touched or treated.

I try to explain the needs of our autistic child, but I just worry so much that my NT child is being taught that their bodily autonomy and safety don't matter and that they are unfairly subjected to stricter rules.

Thanks so much for all the very useful information so far.

@hotfairballoon girks often present as articulate. We’ve been living with the male. diagnostic criteria for years.

Taje a look at the Autistic Girks Network white paper.

https://www.autisticgirlsnetwork.org/keeping-it-all-inside.pdf?fbclid=IwAR0iNi_UUTs3p80-wNJa57MoGdskLcDnJWDTXAmh1F9zi4QTOvHEb4EGt54

@AutismProf something I've been thinking about recently is how there is so much focus on what is "wrong" and little discussion/ research into what constitutes a happy life for autistic people. Not that we are a homogenous group! But, there are so many commonalities in our experiences, as I've discovered from meeting and developing friendships with other autistic people.

I was listening recently to "The Good Life" project by Robert Waldinger and Marc Shulz. It is the biggest longitudinal study on the human condition and what constitutes happiness that has ever been done. It seems to indicate that in the end what people value when looking back at their lives is connection, authenticity and purpose. And it struck me how this is much, much harder to achieve for autistic people - not that most NT people find it easy or necessarily pursue the right things to achieve this - because we are living in an alien world. And that the pressure to follow others' prescribed patterns of what life "should" look like makes this even harder.

I suppose my thought was that I wonder what such longitudinal research for autistic people would turn up, in terms of commonalities in what led to genuine happiness and contentment: connection and purpose and authenticity. It's a shame that everything has always been about "deficits" and "differences" and not trying to look for any vision of what a positive life that didn't lead to huge mental health problems and stress and higher suicide rates etc, might look like.

Not sure what my question is exactly. 😆 But wondered what your thoughts were on this. I don't think NT people will ever be sufficiently understanding to adapt the world to make it tolerable for many of us without it causing us huge damage. Even from this thread you can see people who despite apparently having lived with autistic people seem to have no comprehension what it would be like to even manage a week living in an alien world. So recently I've been thinking that rather than trying to "fit in" to our own huge detriment and it still not being appreciated, autistic people need to be far more robust about insisting on lives for ourselves, but with everything being so confusing probably very few of us have much idea until much too late in life what that might look like! And there seems to be so little positive research into what is GOOD for us, rather than what is bad.

Autism isn't just one condition really; it's a name given to those who show differences in 3 core areas - social interaction and communication, flexibility of thinking, and sensory perception. My hypothesis is that there are a number of reasons why this triad pops up - one of which is 'mainstream' heritability.

This is fascinating. Could you say more or recommend where I could learn more about this?

@Kingdedede that makes sense. None of the autistic people I know are abusive or would ever behave like that. I think on the threads you mention there is a great deal of behaviour attributed to autism that has nothing to do with being autistic and those people are sadly just married to abusive people and looking for something to blame. I am sure some autistic people are abusive just as some NT people are and nobody should ever stay in an abusive relationship but there's no correlation between autism and abuse, they are completely different things (in fact more recent research shows autistic people generally have more empathy on average, they just communicate it in a different way).

Can I refer you to my earlier answer to @JenniferAllisonPhillipaSue ?

I think it's a really complex question as autism trajectories are also complex. If you'd met my son at 6 you'd have thought him a quirky chap with NT friends who was doing well at mainstream school and would have assumed he had low support needs and was "no trouble at all". A friend's son was really struggling to manage her autistic DS at the time and her daily life was way more challenging. The difference was the her son's behaviour was externalising and mine was internalising. Her DS got lots of help, mine didn't. Her son is now a functioning adult; mine isn't. His internalising manifestation lasted until it didn't, he had a breakdown, we nearly lost him. Too often support needs are perceived to be related to the impact of the autistic person on those around them, rather than that the person themselves is thriving.

This not to minimise the complexities of managing non-verbal autism or autism with learning disabilities.

To me as a prof, I can clearly see the golden thread linking the autisms. So I am not sure if we will get subdiagnoses and I certainly don't like the "autism level 1, 2 or 3" categorisations. I suspect autism plus neurodevelopmental descriptors around sensory, internalising/externalising, language skills, etc might be the most helpful way to go.

This is really hard, and quite common.

I would ask for a meeting with the senco and take along the reasons why you think she might not be thriving as well as they think. Do you have emotionally based school avoidance guidance locally? That might help you? (This is the final destination of a high proportion of our primary school compliant, masking autistics).

The phenomenon of masking and then releasing at home is much better known nowadays. Websites like "not fine in school" might help you. I would also contact your local sendiass service to see if they would accompany you to a meeting to talk about your concerns, if you feel like school isn't taking your concerns seriously.

This sounds very "classic" of an autistic girl her age to me. Any paediatrician with a clue does now have a grasp of how things manifest very differently in girls and they would recognise this from what you have said so if I was you I would push for referral. Especially if she herself is saying she thinks she is autistic. Has she read up on it? There are some really good books now like Aspergirls by Rudy Simone and Women and Girls with Autism Spectrum Disorder by Sarah Hendrickx. I was so worried about my daughter suffering undiagnosed like I did, yet despite her being articulate, bright, outwardly confident and sociable, the female autistic traits were clear enough that she was diagnosed aged 4. Just don't be fobbed off is my advice. Not that you asked me! 😳🫣 Just feel very strongly about autistic girls not being left to mentally collapse before they can get support, you are doing the right thing recognising it.

Anyway sorry OP too, I will shut up now, and hope you answer my sort-of-question-rambley thing I posted. 😆

To me as a prof, I can clearly see the golden thread linking the autisms. So I am not sure if we will get subdiagnoses and I certainly don't like the "autism level 1, 2 or 3" categorisations.

But this minimises the experiences of those with more disabling forms of autism and those who care for them. "In recent years, policy has taken a sharp turn away from the needs of children and adults disabled by severe forms of autism, in favour of solutions more appropriate for those with milder disabilities who can self-advocate. This is jeopardising the welfare and lives of the vulnerable, voiceless population". [NCSA, who phrased it much better than I could]

It's as though you want to categorise those who lose a toe as being the same as those who lose an entire leg. The levels of support required are incredibly different. There is a golden thread (amputation) but a definite benefit in distinguising between the two; and I don't understand why autism practitioners are so against differentiation levels of capability.

Yes
In part because the autistic neurotype often includes a very sensitive hypothalamus - easily triggered fight/flight/freeze response. So there is a natural inclination.

On top of that are all the complexities of living as a minority neurotype in a socially and sensory complex world. I think the modern world exacerbates this enormously. Social media makes it hard to have social downtime or get away from challenging online relationships with peers. Our world is noisy, bright and fast paced. Only a little over 100 years ago, cars and planes were rare, people often operated within a small social network around them where they knew and were known by most people they came into daily contact with - the butcher, the greengrocer, the neighbours etc. In the evenings we had oil lamps or candles, and no screens. Many people - especially men - in professional roles had servants or wives who could take on much of the mental load of day to day life.

I think my son would have functioned much better in earlier years. He would have found his calling as a scientist or some such, or become a monk even earlier in history. As a scientist he would have had a housekeeper who would have fed him, kept his house clean, managed his washing etc. He would have been regarded as a terribly clever man who couldn't be expected to manage mere routine concerns! If he'd been poorer, he'd have been a farmer or apothecary or something, and again his social quirks would have been excused as a symptom of his brilliance and unworldliness.

Yes. There is certainly a common craving for a much, much simpler life. And unfortunately the academically able are often encouraged to pursue lives that aren't going to be like that at all, which can lead to a miserable existence.

I hope for the generation of kids coming through now earlier diagnosis, and crucially self-understanding of their own needs, will lead to very different outcomes and happier lives because they will have a chance at least to "design" a life that will work for them. Maybe.

Because I don't perceive any one form of autism as inherently more disabling.

Individuals may have lower or higher support needs of course, (and this can fluctuate in a person over time, too) but at a category level it's genuinely not possible to say "this is mild autism" "this is severe autism" "this is profound autism".

So I disagree with your "lost a toe" Vs "lost a leg" analogy I'm afraid. How do we measure that? In the impact on the family? On the impact on the carer? On the person's quality of life? And if so, according to whom?

My son is what you would probably call "lost a toe". He is academically very able. Was in mainstream school all through. But the impact on him of operating within the NT world was cumulatively enormous. He had, as I have said elsewhere, a complete breakdown. 5 years later whilst he is no longer in imminent danger of suicide, he spends his days in his darkened bedroom and is entirely reliant on others to advocate for him. I run his finances, his universal credit applications, his pip applications, organised his limited capacity for work assessment, feed him, have to chase him to wash himself, have given up on him ever cleaning his teeth, have to wash his clothes, and expect him to be dependent on us forever. He's in his mid 20s. I don't feel like that's mild. And I work with tens of families with similar experiences every year.
On the other hand, my father found his work niche in an obscure field and in his 80s still works 7 days a week. He found his coping space in work. Is that mild? I don't know. It's different from what my son went through, and it's different from parents whose youngster is smearing feaces from a nappy in their teen years.

I suppose that is why some kind of explanation of the profile within autism rather than "support needs" or "severity" judgement is what I think would be most helpful.

How does everyone manage with accepting your child is not going to be doing the same as their peers... mine are now 15 and 21 and I still struggle with them not doing the stuff others are doing... sitting exams, girlfriends/boyfriends, going out with mates, working etc etc... my 21 year old tried uni but it didn't work. Youngest isn't in school etc. they are both cheerful kids most of the time. I struggle though, I think the gap between them snd their peers is massive now as they have got older. Not really a question but I'm after any advice...

Sorry, this was a reply to @Sherrystrull 's question on page 2 about a link between autism and anxiety. Quite failed!

Just to add both are always at home, have some online friends but none in real life. Oldest is working with job centre but it's not really what he wants. I always say he'd of been much better suited to life years and years ago. The modern life is far too busy for him