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!

@ReddishBrown you’ve used the exact examples I was thinking of!

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

@Bunny2607 have you explored the possibility of the agitated behaviour and subsequent vomiting being migraine related? Both of mine have suffered with this (both improved by dietary changes, when at their worst, about that age) and from what I've read, this sort of autonomic dysregulation can often be a feature of neuro divergence.

I'd be really interested in this too! My dc and I can laugh about our "miscommunication style" at times but it can be quite distressing for both of us also.

That’s interesting! I wouldn’t mind if she was autistic or not. But my goodness she is sensitive.

Most NHS funded pathways literally cannot "diagnose" PDA as it is not a recognised condition described in the diagnostic manuals we have to use.

A complication is that demand avoidance is a relatively common coping style in autism, where the person is in a setting that isn't meeting their needs, because as you know demand avoidance is just an avoidant ("flee" or "freeze") anxiety based response to expectations. The demand avoidance dissipates when the person feels safer in a more conducive and supportive environment. "True" fully intractible, actively avoidant PDA is really quite rare. There is a paper to this effect on the PDA website published late last year.

In our area we talk about autism with a demand avoidant presentation as we can't "diagnose" PDA per se.

My ds is ASD and adhd and my dd at aged 10 is now presenting as quite significantly autistic, but finding resources to help us help her is hard- any links to websites or books aimed specifically at girls please? We are struggling to cope.

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 have a serious mental illness and have support for this. However two mental health professionals feel that it's highly likely I have autism. I definitely meet the criteria but is it really worth getting the official diagnosis? Would it really be beneficial?

Hey, thanks for starting this thread. I have a 4 year old in nursery and I'm pretty sure he's got autism. Nursery weren't that fussed and advised not seeking a diagnosis at this stage although said he MIGHT be neurodiverse. Would you recommend getting the ball rolling on a diagnosis or waiting to see how he develops when he starts school? He's getting on pretty well, although he perhaps struggles to regulate his emotions a little more than some other kids his age (and he stims lots).

I suspect I may have autism myself, if that makes any difference, though I am definitely (what used to be called) high-functioning.

How best to get assessment for a 4.5 year old please? South east.

Hey everyone, I am off to bed shortly and working tomorrow, so I will keep working through as best I can but do please bear with me. I wasn't expecting quite such a response!

My daughter's school don't think she displays any signs of autism but we're pursing a private diagnosis, is that a possibility?

Which behaviours are not a sign of autism?

It's really important to look at the government's preparation for adulthood materials for older autistic youngsters. This is because many otherwise academically able autistic people struggle with aspects of living and independence skills.

The best thing I have seen that helps youngsters identify any gaps in their life skills and provides support to try to develop any missing skills, is a free downloadable pack, here:

https://irp-cdn.multiscreensite.com/28303aa1/files/uploaded/Post%2014%20personal%20development%20programme%20final%20%281%29.pdf

OT: quite possibly, but you'd be looking at private at her age.

Our DD has recently been referred for assessment as is now presenting various traits: sensory issues mainly with clothes/shoes, short temper which results in saying really hurtful things to us, sometimes trying to hurt us physically. The main problem is we have no clue how to deal with it and are probably making situations worse due to us losing patience. But at the same time, we feel like we can’t just let unacceptable behaviour go. I am expecting the referral to take some time (possibly years) so if you have any advice on any books/materials/support we can access to help us manage it in the meantime I’d be most grateful.

What would you say to an adult who doesn't "believe" in autism, "labelling" people or treating them as "special".

(Not me btw!)

It’s interesting that you feel the onus is on the ‘NT’ person. What resources are there? As a mother preteen autistic boy I really hope there is a lot more understanding when he gets to adulthood. He is the only diagnosed autistic person in my/his father’s family but I can see the traits in many. Personally, and I know how bad this sounds, I would never knowingly get into another relationship with another Autistic man, and yes there is also the possibility that I am Autistic myself.

Many autistic people are extremely loyal to family and friends, so I wouldn't say serial cheating is a very typical behaviour.

My guess would be that it relates to executive functioning issues around impulsivity, seeing consequences, that kind of thing - but the sort of manifestation of that you are talking about seems more ADHD really - an intention deficit, rather than a core social communication issue.

Why do you think you are an expert when you only ever had a single perspective ? Are you a parent , sibling or even an aunt to anyone with autism ? If not then all you have is one sided view that will be undoubtedly biased

EHCP referral - why you think he needs a statutory assessment, as in, what are his SEN and why are they beyond the means of school to manage? Ideally evidence of assess-plan-do-review from school, even more ideally showing that they have coordinated support and called in external expertise to hone their interventions.

With my son I bought a book about Asperger syndrome (as it was then), read it with him, talked about the strengths and difficulties many people with Asperger's have, and how we wondered if it sounded a bit like him. He agreed it did, and so we said we were thinking of having assessments done to see if he was this rare type of person.
The diagnosis, when it came, was a huge relief to him. We always presented his autism as neither a positive (hate the "superpower" stuff) nor a negative, just a fact of the way he is.

Did you read the thread? I assume not?

I am a child of an autistic person, a neice of multiple autistic persons, a sibling of an autistic person, a parent to two autistic persons.

Have to confess I am not an aunt of an autistic person.

I've been told my child has to show significant deficit in multiple contexts (ie at school) and impairment in school for a referral (referred by school in our area.)

Thing is as a girl she doesn't show her anxiety at school.... the rule following black/white behaviour/friendship issues/se sory issues/not liking change is all there but she's high achieving and compliant so it's not considered a problem to them.

Presumably this is happening to a lot of girls? What do you suggest?!

Thanks so much.i tried to start a thread earlier and it hasn't taken off and you're just who I need!

My son was diagnosed with Asperger’s aged 12. Now in his late twenties. 2 questions

1. Is it common for people with Asperger’s to deny or “grow out of “ their neurodivergence ? Son says he very consciously worked on not being ‘weird’ and fitting in. From 18 he hasn’t thought of or referred to himself as having Asperger’s.
2. as Asperger’s is no longer diagnosed, does his diagnosis still stand ? Does he now have ASD

thanks

Yes I found that interesting too. Because it sounds a bit of a catch 22. We can't possibly ask the autistic partner to 'mask' because it's apparently so hideously stressful for them so the non-autistic partner has to suck it up and essentially ignore their own needs. Never mind the hideous stress for them! That sounds less of a life partner role and more of a sacrificial lamb position.

Serious question: we all have to mask in the world to some degree. It's part of what allows us to live and be accepted in society. The alternative is rejection and isolation. Why is the non-autistic partner the only one expected to 'mask' or show empathy? That sounds more like parenting than partnership. Frankly, it doesn't sound very appealing.

So is there a place for a modern version of ABA or at least frustration tolerance expansion? And if not is there an acceptance that rejection is almost a given?