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!

Hi AutismProf, my dd is 20 now. Has an Aspergers diagnosis. Suffers with confidence and anxiety so does not go out on her own. Went through the whole of school and 6th form and got all her GCSEs and 3 A levels but always felt an outsider and made no friends. She is VERY young for her age and games all the time. Only friends she has are online gaming friends. What can she do now? She has no confidence to get a job at the moment. She is so very quiet and nervous. She did attend a couple of interviews but heard nothing back. Are there any schemes/support groups you know of that can help her with confidence/life skills. She had an awful experience with Prince's Trust so not them! I am so very scared for her future. 😢

not sure if it has been asked but what was your career path to your current position ? qualifications, experience, extra training etc ? I am currently in the process of applying to do a trainee as a EMHP , currently at uni on a mental health nursing degree for that job so would be amazing to get the trainee to leave uni and fast track my education on that part.

Would you recommend taking additional qualifications such as a psychology and counselling degree, or specialist learning difficulties diplomas etc. thanks :)

There's also way too much training directed at "behaviour management" instead of understanding the pressures that cause such "behaviours" and reducing or eliminating them,

Hear hear 👏👏

Im behaviour support outreach in education.

All my "behaviour management" training is based around getting staff to look at the communication of behaviour.

Getting them to imagine a bad morning. Getting to work and then having people ignore how they are feeling and just demand they comply with a smile on their face. Getting them to list all those feelings they have, how peoples attitudes make them feel etc.

Then explaining they have an NT mind, an ability to explain how they feel and manage their emotions yet feel all that.

So why do they expect someone with SEND (I generally support those with communication needs) to manage all that and "just do their maths".

Often I get comments about how I haven't given them strategies to manage their behaviour - but what they mean is comply.

And I always say "actually I have. I've given you a massive toolbox of the skills you need to support your pupil to develop so they are able to manage their emotions and therefore be able to comply to the demands you are playing upon them".

Luckily 95% of the time the penny drops.

I despair for the pupils of the staff who still just want a magic wand and for the pupil to behave NT when they aren't.

I have an autistic ds myself and it's really helped me develop my own skills too.

What sort of therapy (or any assistance) would make the most difference to a 6 year old autistic girl? (ASC diagnosis with pda profile, emotional regulation difficulties, doing ok at school, sensory differences, likes to be social but doesn't get it right, anxious and very negative particularly about herself). Thanks

I am a teacher who would like to increase my knowledge/understanding for ASD/ADD/ADHD students. Where would you suggest I start looking for courses please?

This sounds perfect, thank you @MistyFrequencies. I totally agree that society needs neurotypical people to have a complete attitude shift but in the meantime DD is distressed and friendless. I’d love it if both NT and autistic people could view it like speaking two languages - and built into that the understanding that it’s not reasonable for only one side to do all the heavy lifting

Perhaps you didn't see the OP and their previous comments re profession & personal experience. Does a brain surgeon not qualify as an expert unless they've had brain surgery?

What’s your opinion on ‘no expectation’ parenting for an autistic child? A teenager, who is autistic but not severely (masks very well).
Parents have been told to essentially never say no or expect them to do anything.

I wanted to make a comment on this discussion of masking at home some people are referring to. And how unfair it is for the NT to do all the adapting.

I’m autistic and I’ve had long term relationships with NT and autistic people. Also parent to autistic girl and autistic boy. My first thought is misogyny and the expectation on the woman to be supportive and gental and all that crap is not exclusive to nurotype.

OPs worktop analogy is a good one!

Re masking at home I would like to point out NT people don’t have to mask out of the home to the extent autistics do. To get home then have to continue to mask for a NT partner is exhausting. We have mental checklists we constantly have to remember to run through to ensure we are acting appropriately’. Home should be a place to relax for both. To give context to this my ex was upset I never asked about his day said it made him feel unloved- so I had to add it to my mental list- ask him about his day then he would say “fine” anyway. For me I would expect him to just tell me what I he wanted to about his day without me having to ask. He said my resting face was angry so then I had to put effort constantly into how my face looked. There are so many little things that are different and it’s exhausting to constantly have to translate yourself for a partner. How exhausting is it really for a NT persons to just say what they mean/want??

My autistic partner was controlling. Because of his autism yes but it’s still abuse. Teaching autistic boys in particular how to adult is important. You cannot control others to make yourself feel better yet for disruptive male autistic children their life experiences are family adapting for them which is unrealistic when they become fathers and partners. I see the same with my son and daughter. My son gets adaptions because if he doesn’t he is disruptive so it’s easier to adapt for him, however my daughter will just suffer quiet confusion and anxiety and be expected to ‘manage’ or learn. My son says “I’m autistic it’s not my fault” my daughter says “I’m autistic so I don’t understand” essentially she accepts fault where she should not always- this is what society teaches them.

My final thoughts on diagnosis is it’s always worth it even with low support needs. It’s so important for an autistic person to understand WHY they feel differently and they can make their own adaptations. I was diagnosed as an adult after my child- very common. It was the best thing for me. Previously if felt alien and broken and had been diagnosed and treated for erroneous mental health diagnosis. It affects your self esteem and your susceptibility to be taken advantage of. Since diagnosis I’m the happiest I’ve ever been and much more functional. Feeling alien and wrong I’m sure is contributing to the over representation of autistics in gender transition. Diagnosis and self and societal acceptance of the difference could save so many from unhappiness.

This is very insulting to OP. By that token, no gynaecological surgeons should be male. No cancer doctors should treat cancer unless they’ve had it. And so on. What a load of nonsense!

It’s the last sentence that gives the answer. “Gloomy sky” = fading light and “gathering snow” = the weather.

Can difficulties in social communication also be manifest in written communication? My child is autistic and finds it very hard to break down large pieces of text to summarise or identify what is the most important information. It affects their school work in quite profound ways.

@AxolotlOnions

Would you support a broadening of the NICE guidelines to allow other professionals, such as yourself, to diagnose autistic children without a Psychiatrist or Clinical Child Psychologist involved? It could cut waiting lists and you are highly trained, have lots of experience and are already involved in diagnosing after all!

^^
I'm an Ed Psych and also work in a neurodevelopment team. I work as part of a multidisciplinary team, usually alongside a SALT when completing ASD assessments. We don't need a psychiatrist or clin psych to diagnose. We can do that. We are suitably trained professionals and have ADOS/ DISCO /ADAI training.

Sorry should have said we do have a paediatrician in the team but they mainly work on the ADHD side.

Thanks for this thread...it is very interesting. Another couple of questions to add to the list - hopefully I've not missed that they (or similar) have been asked already, if so please ignore:

1. I have an ASD DS, my DD I have questions about but she is only 4. People think I am bonkers to suggest that she may be ASD and a lot of the 'signs' I can't really explain (it's more a feeling around her interaction though I'll try to note some) profile/signs: very energetic, very over pronounced facial expressions when discussing one on one with me (almost copying), repetitive play with dolls, always climbing/jumping, 0 to 100 with emotion (although can get past it reasonably quickly), very social when I'm there (although takes a while to warm up) but when starting nursery was described as a quiet girls/only interacted with adults (completely different to high childminder would describe her), severe separation anxiety (particularly with me - mum) when dropping off at things. Our lifestyle is set out with a lot of routine - same activities at weekend, same holiday place, same routines during the week. I do not think she will required any SEN support at this stage, I understand that these are not easy questions to answer but would appreciate your thoughts...A)would the ADOS likely pick up given the 'signs' are discrete? B) what ages would you think is a good age to get tested given no SEN expected? C) is there any 'common' but signs which I could look out for in young girls? D) how prevalent is it to have siblings diagnosed (I know the 25% increased likelihood)?

2. what is your thoughts on private v NHS diagnoses?

I have worked with many EP's throughout the years with my son...everyone I have worked with has been insightful/understanding...I am in awe of EP's. Thank you for your work in this area and normalising ND folk

Teaching autistic boys in particular how to adult is important. You cannot control others to make yourself feel better yet for disruptive male autistic children their life experiences are family adapting for them which is unrealistic when they become fathers and partners. I see the same with my son and daughter. My son gets adaptions because if he doesn’t he is disruptive so it’s easier to adapt for him, however my daughter will just suffer quiet confusion and anxiety and be expected to ‘manage’ or learn. My son says “I’m autistic it’s not my fault” my daughter says “I’m autistic so I don’t understand” essentially she accepts fault where she should not always- this is what society teaches them.

@PurpleBugz this paragraph of yours really resonates with me. Me and DH have a lot of disagreements on this point. He will always give in to avoid any conflict but I will say that sometimes things have to happen that DS doesn't like, eg cancelling a plan if the car breaks down or the people we are visiting are ill, etc. We CAN make the world revolve around him but that's not going to do him any favours when he's old enough to realise the world doesn't care about him as an individual and lots of things will happen that will make him uncomfortable. It's our job to try and help him cope with those situations.

@AutismProf I love your way of talking about autism as a natural variation, rather than a disability. Any recommendations for books to read please? I'd love my children and I to think of ourselves more this way.

I’d be really interested in that too if you wouldn’t mind sending to me too.

My dd can’t read lots of text either ( although she can read novels)

Shes hugely struggling with A level. Despite being really bright.

Thanks @bryceQ and @JenniferAllisonPhillipaSue that was my instinct.

@DuranNotSpandeau
It's a very difficult balance to get right!

I tend to allow any and all adaptations that won't negatively impact on others. If it's going to negatively impact on others I consider it but try to find a different way. I don't count myself in others because my life is massively impacted by my kid needs. It's hard though because if one kid will benefit but the other suffers it doesn't happen which is a negative impact on the other child 🤦‍♀️. You just have to acknowledge how everyone feels and try find another adult to facilitate with one child while you support the other. Learning how to manage the reaction to things like the car breaking down is very hard but must be done because as you understand that's life and they will have to live it. We can teach with understanding and compassion through it's very important not to teach your child they are wrong to feel as they do. One of my mantras "it's a reason not an excuse"

Are you able to share any knowledge you have about any potential link between autism and poor memory? DSS12 high functioning has at times an alarmingly poor memory recall whether that be following instructions just given to him 5 mins before or remembering big events like travelling to places on holiday. Often his reply when asked questions about what he’s been up to is ‘I don’t know’. I wonder if this is just his default response or if he truly can’t remember things. Is there anything we can do to help him?

From a diagnostic point of view it makes sense, but I appreciate this viewpoint.

We look for the same core areas regardless - social interaction and communication, flexibility of thought, and sensory processing differences.

I don't think it's as simple as "mild" or "severe" autism (I know you haven't said this) or even high/low support needs. One of my own kids has no learning difficulties, is academically able, but had suffered terribly from burnout and mental health difficulties and we came very close to losing him through suicide. The thing is, a person who is doing ok in society as a 6 year old at the time of diagnosis may not be ok at 15 as the expectations on them and their peer group changes over time.

I don't quite know how to adequately express an individual's profile within the autism spectrum, at present I don't think we gave a fully satisfactory answer, but I think some of the recent attempts at neuroprofiling within diagnosis are trying (eg, Portsmouth model).

Is he autistic? Not a lad with developmental language disorder (DLD)? His communication skills sound quite good.

Autistic language development can include a language delay or atypical order of speech acquisition (called Natural Language Development; involved gestalt acquisition of language in blocks - Prizant is a big cheese in this area if you want to investigate further). So yes there's still the possibility that he may become verbal. Does he have speech therapy? If not, do push for it.

It's interesting that you mentioned earlier about the lack of research into ND and the curriculum. You're completely right. What else would you say are the gaps in the research?