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!

I've just had a look at the test and WTF!?! How hard are the questions/texts for a 10/11 year old!

Also, is it just me or does this question and answer not make sense?

"5. What two things made it hard for Innis to trust his own senses when he was looking for the wolf? Tick two.
Relevant extract: The howl pierced the darkening sky and made Innis Munro stop dead in his tracks. He pulled his hood down, listened intently. The only sound was his beating heart. That was a wolf, he thought. But it couldn’t have been. There were no wolves on the island of Nin, no wolves in Scotland any more, not for almost 300 years. It was just a trick of the wind. He pressed on but kept his hood down. The afternoon light of early March was fading fast, snow was falling, and he was still a good half-mile from home. Innis walked faster, told himself it was not the howl that made him hurry but the gloomy sky and gathering snow.

• How flat the land was.
• The fading light.
• How tired he felt.
• The weather.
• How fast he was walking.

Answer: The fading light, the weather."

One, he wasn't "looking for the wolf" so the question makes no sense to start with, he was walking home, and heard a noise that sounded like a wolf. And also how is "fading light" an answer - I can't see anything in the text that infers that the fading light made it hard for him to "trust his senses", the weather yes, as he thought the howl could be the wind. The fading light was why he hurried home.....but how could fading light have anything to do with his ability to identify the howl? This sort of imprecise question really annoys me!

Do you believe autism is hereditary? I have two sons with autism, a nephew, I think I have autism although haven't explored a diagnosis, pretty sure my young brother does and my dad absolutely does.... I think it all comes from him and it almost hits every other child then grandchild. So my elder brother is NT I don't believe I am, younger brother is NT but youngest brother isn't etc. hope that makes sense but I think it's really clear it's comes down my dads side.

I also think the support for helping young adults into work is so inadequate... my son is 21 and is working with the job centre who are very kind to him but after primary with both my boys I felt support just disappeared. Both struggled a lot in high school my 15 year old doesn't go now it's been hell. We need more support in high schools. (I get you probs see this already it's just so frustrating)

Great thread OP. I get very fed up with the negative posts on ND on here.

Do you think there is relationship / correlation between trans people and autism? Could you please tell me about this or direct me to any studies etc? I am interested in learning more. Thank you 😊

Oh maybe, thr GP did mention a combined assessment. Tbh no one has been very clear or helpful about this process or what my daughter needs most.

you left out my question but answered other questions after mine 😞

Really great thread . Very helpful to read your responses. They are exactly how I feel but can't alway articulate.

That would be great, thank you 🙂.

I'd love to learn strategies to feel like I'm recognising and meeting his needs more easily rather than sometimes only realising what was happening after the fact.

It makes me feel as though I'm constantly getting it 'wrong', either punishing something that he can't control/help, or letting something go that he is fully aware of/doing deliberately.

When I DO get it right, eg I've managed to stay on track through a meltdown: realised it was building, altered my approach, helped him to calm etc, it takes so much out of me because it's so hard for me to be flexible to the unexpected change, that I feel like I ruin it all afterwards by being tired and snappy about something unimportant later.

It's hard to reflect and see that sometimes it's my inflexibility or assumptions about what's right that create his distress and build up to a meltdown.😞

@AutismProf - (I have a female child who school wont refer unless they show
"A. Persistent deficits in social communication and social interaction across multiple contexts" as well as significant impact /clinically significant in multiple settings.

You asked "said who." This is the referral criteria they are using in my area. I was surprised it was still deficits based but actually hadn't known it said across multiple settings. I work with families in a different role and had heard of this and didn't think they were correct when schools had told them this but I've been sent the referral criteria.

Does this mean the referral criteria varies in different areas?

I am not sure where to go next to get her diagnosed. In some ways we manage everything at home as I'm fairly clued up on what works for autistics but I still think it would help her to know.

Ps thankyou for doing this thread. There are SO many families (Inc ones I work with) who just can't access information - I wish they'd employ someone like you to be on mumsnet one day a week!

I will die on this hill is a great book to read

I Will Die On This Hill: Autistic Adults, Autism Parents, and the Children Who Deserve a Better World

https://www.amazon.co.uk/Will-Die-This-Hill-Autistic-ebook/dp/B0B7KLLFQ7/ref=mpssa111?crid=VPBE2DYDBYOH&keywords=i+will+die+on+this+hill&qid=1684475106&sprefix=i+will+d%2Caps%2C69&sr=8-1

I will get back to it. I answered a couple of more straightforward ones/ ones I had a clear set of thoughts about late last night.

Answering every question might take me a few days!

Look at Ausome Training online. They have Konfident Kidz courses for varipus ages. All the trainers are Autistic and I havent done their kids courses but have found all their courses Ive done excellent.

Can I please ask about schools? Autistic year 8 who has struggled so much since secondary. This is what prompted a recent diagnosis although I queries this when she was 6 too.

Trying to look at better schools. Hers is independent, some academic pressure, small but not a hot house. Still too much pressure for her. States close by are so big ( she would not cope) and other alternatives are autism specific. She is bright but needs rest/ reduced academic pressures. Any thoughts re thriving from your general experience? Trying to work with current school but rather disillusioned and so aware of year 9 as my window to change if I do ( which would be huge for her). Opting out of mainstream is scary and mostly required ehcp which I don't have. The decline for my dd has been scarily rapid and I feel she is unhappy and exhausted.

Yes, autism can run in families, esp the old "Asperger" no learning disabilities type. This is really common.

Autism can also pop up in an NT family. People with learning disabilities have a higher chance of autism, so it's common for it to co-occur in youngsters with Down's syndrome, epilepsy, hypoxic brain injury from birth etc.

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.

@NotMrsTumble aware I haven't answered all your question. I will get back to the other parts later - but have to get on with the school run now!

This might be a silly question, apologies if so. Can you ‘discipline’ a severely autistic child?

DN is 4 and non verbal, diagnosed with severe autism. He is often violent with my DS (4.5) and will hit him/kick him and bite him. BIL and SIL say you can’t discipline an autistic kid and let him do it and it’s really upsetting me that DS is saying he doesn’t want to play with his cousin anymore because he doesn’t like being hurt.

Any advice?

CAMHS quite literally aren't commissioned for 'treating' people with ASD. This is coupled with the fact that much of the anxiety that people with ASD experience is a direct result of trying to operate in an NT world. So they say that any anxiety has to be over and above that which they would expect any autistic person to experience.

Do refer again (and again, and again!) though, and if you can try to get a variety of people to refer, that can help. DD2 is 15 and has been referred to CAMHS about 5 times. Each time she was turned down, until one lady phoned and said 'I should be closing DD2's case but I just feel that there is more going on for her.' That was last February. Finally in about November time she was assessed and offered 'single session family therapy'. We went, despite me telling them it wouldn't help. The therapist worked out pretty quickly that DD2 couldn't engage with her style of therapy. "Imagine if...." was a non-starter. She wanted to discharge and I then got pretty annoyed and asked that having jumped through all their hoops, at what point might someone take responsibility for properly assessing her anxiety. She got a bit huffy but said she would discuss with her team. I then got an email a month later to say she'd been put on the psychiatry waiting list. Still waiting, but at least on the list.

You're not alone, they ignored my question too 😏Which is often the way, it's easier to talk about those with autism who mask, those who can be accommodated, how the NT can make appropriate changes - but let's not talk about children and adults with severe autism, those who will need lifelong support. Such people rarely feature in articles and programmes about autism because it makes people feel uncomfortable.

You can certainly try, you just need to find a method that is appropriate for their understanding, For our severely autistic son, that was a version of the naughty step - we called it the 'cold spot', the far end of the sofa that is still in our sight but where neither of us normally sit. He would sit on the cold spot, being returned to the cold spot if he got up, with no toys, until he visibly calmed down. One of us would sit at the other end of the sofa so he wasn't alone. It would only take a few minutes to be effective (change of environment / break the cycle) and he developed a habit that he would lean over and pat our leg after a few minutes to "apologise". Then he could go and play again.

I was working through in strict order under after 11pm. I was still only on page 1 of questions.

There is no conspiracy. It's just I am one human who got tired.

I’d also be very interested in that.

I’m interested in whether you think there’s a risk that a private assessment centre (funded by NHS Right to Choose) would be likely to falsely diagnose my daughter? We need the assessment because she’s struggling, but I genuinely don’t know if it is autism or not so I’m concerned a private centre might over-diagnose, like the ADHD assessment centres in the news recently.

They should be removing the child from the situation. That is a clear communication that she not want to be in that space. I have a violent 4 year old. Whilst we can't discipline him we absolutely say that's not acceptable and would remove him quickly, he would never be able to repeatedly hurt another person. All behaviour is communication.