Encouraging DS to declare his ASD

[natureleaves]

DS who is 21 is starting a PGCE this September; me, DH and DS all think he likely has ASD but doesn't have a diagnosis of ASD. I know it's not my place to interfere as DS is an adult but should I encourage him to mention his ASD to the uni and school he'll be placed in. Knowing DS he won't mention it and only might do if he started to seriously struggle. Also as DS doesn't have a diagnosis is there anything legally that could happen by declaring that he thinks he has ASD.

As for leaving a class of pupils, or even one pupil, or environment in some circumstances, because things aren't going well or overwhelm, not a hope in hell.

The whole point of reasonable adjustments is to make it possible for people with diagnosed disabilities to be able to competently do a job, not a get out of jail card for choosing a job they can't do or only can on a good day.

Once those adjustments have been made, if the person's disability makes it impossible to do the job safely etc, they will rightly be pushed out under capability procedures. (I'm physically disabled btw)

My Dc has literally battled ASD impacts their whole life and still does daily, including the commute in and out.
Covid caused an unexpected career change into (state) schools and working often directly with children. It is obviously not the best environment for someone with their difficulties. However they also have unique strengths, talents, and understandings to bring to their role too, but it comes at at a cost.

It's a very stressful high paced environment, takes it's toll on all and isn't for the feint hearted. Children and young people, some with ASD as well as all sorts of difficulties and disabilities are depending on the adults around them, and occasionally in critical moments when what an adult sees, interprets and does next, is the difference between disaster or just another school drama.

In my Dc's case they are also quietly open as having ASD and are an adult role model. There is no hiding in the toilets.

@Clymene

If neither you as his parents or any of his schools in 15 years of education have ever thought he may have autism, what makes you think he has?

Sometimes struggles/issues become clear in hindsight, and with acquired knowledge and education.

OP I can relate to your post as my DS is a similar age with similar questions about himself. I think some of the responses here are a bit harsh. It's obvious to me that you're trying to increase your knowledge and do the right thing by him.

Nowadays I would be very surprised if s child goes through their entire primary and secondary education without a single teacher raising a concern @OnlyMsLonely

I have an autistic child - very high functioning - but even so, it was mentioned from preschool on.

DS was diagnosed with dyspraxia at pre school age and was told he had some autistic tendencies but not enough for a diagnosis. Throughout school no one ever mentioned that they suspected ASD but did know about his dyspraxia. I stupidly thought that he can’t be autistic because he’s been diagnosed already and was told he doesn’t have it but the last couple of years I’ve realised that the person who diagnosed DS could have been wrong and autism presents differently at different ages.

@Clymene

Nowadays I would be very surprised if s child goes through their entire primary and secondary education without a single teacher raising a concern *@OnlyMsLonely*

I have an autistic child - very high functioning - but even so, it was mentioned from preschool on.

During lockdown when I was really struggling with how angry my DS was I had a (very long) phone call with a counsellor (who specialised in neurodiversity) where I recounted many anecdotes from my son's childhood, and things he'd done and said more recently. She said that from what I'd told her she would highly recommend he was assessed. Not a single suggestion was ever made by any teacher / child minder / career counsellor / family member. He never behaved like that in their presence.

Does every autistic person 'raise concerns'?

@stripedbananas

In most Unis they test everyone for things like this including dyslexia, dyspraxia etc

LOL.........of course they don't test everyone for ASD!!! Have you any idea how long the assessment process is ...........even getting referred for assessment is very difficult!

Please people commenting on 'you can't self identify as ASD' yes - yes you can, and peer self-ID is commonly accepted in the autistic 'community' (speech marks acknowledgement that it isn't of course a single, homogeneous group that all think the same) - nevertheless it holds more weight than a NT person being derisive about something they know little directly of. There's lots online around why this is the case, and it isn't for an able person to discount that perspective (ableism).

Self-diagnosis for the purposes of obtaining educational support etc is a completely different kettle of fish - this does require external assessment.

The waiting list for NHS diagnosis is long. Private diagnosis can be pricey, but of course it's quicker, which for a 2 year PGCE it's probably your best option. An ASD assessment can be done in 2 sessions, sometimes on the same day, as others have mentioned by a multi-disciplinary team, or a single psychiatrist may be able to (peer reviewed report). Some will offer an initial consultation to discern whether it is worthwhile to go ahead to full screening.
If/once you have a diagnosis, depending on the depth of report, you could engage a private Education Psychologist to assess your son's learning strengths/weaknesses and understand what 'reasonable adjustments' need to be made, or the uni may offer this with a diagnosis.

"Am I Autistic? A Guide to Diagnosis for Adults - Autism Awareness" autismawarenesscentre.com/am-i-autistic-a-guide-to-diagnosis-for-adults/

It is possible for one person to have dyspraxia and ASD and several other conditions.

Many of the traits of those conditions overlap, hence being diagnosed by professionals who can unpick the confusion

Just to add OP, at 21 you can have a conversation with him about ASD assessment...but I think you'll need to respect if he's not interested in doing this as diagnosis for an adult is a hugely personal decision.

Autism isn't always picked up on in school for a variety of reasons, some kids 'mask' and reach crisis only when academic and/or demands of life become 'too much'. Teachers flag issues when there are academic problems, it's not their role to diagnose autism or other conditions. Once the 'not coping' goes on for a while burn out often happens and then in looking for a cause - a diagnosis. Then looking back you might think 'oh x/z now makes sense'.

@Dntevenknowit

How do you ‘have ASD’? Not a term i’ve heard usually ‘on the spectrum’ but not ‘have/has ASD’

It's just a "people first" turn of phrase. Depends on who is saying it, where they learned it, what the autistic person wants, etc. No big deal unless you make it one.

Sometimes struggles/issues become clear in hindsight, and with acquired knowledge and education.

Like I said, nothing wrong with that at all.

However, deciding you can "self-identify" as having ASD and proposing to use that as a get out of jail free card is not ok.

That is what most people with concerns are challenging.

I'm sorry but this is the most ridiculous thing I've seen posted here in a long time. What exactly do you think the uni will do/ say to a someone who's parents think he's on the spectrum? If you thought that for a while you should have had him assessed when he was younger and all practical accommodations could have been put in place throughout his educational life as it is, its up to your son to decide what he wants to do.

Please people commenting on 'you can't self identify as ASD' yes - yes you can, and peer self-ID is commonly accepted in the autistic 'community' (speech marks acknowledgement that it isn't of course a single, homogeneous group that all think the same) - nevertheless it holds more weight than a NT person being derisive about something they know little directly of. There's lots online around why this is the case, and it isn't for an able person to discount that perspective (ableism).

I'm autistic and I think self identifying is absolute bollocks. I have no interest in the 'community' though.

@budgun cool

Have you had your child assessed @OnlyMsLonely?

@natureleaves - yes, conditions can coexist. Unfortunately now your son is an adult, only he can pursue an assessment. Perhaps you could look into it and reassure him it's not very time consuming?

@Nayday - my autistic child and his autistic friends have zero time for people who self diagnose I'm afraid.

Without a formal diagnosis he will not be entitled to any of the supports given to disabled students. Suspecting you’re autistic and declaring you are are very different things. Of course that doesn’t mean he isn’t autistic but if anyone could just declare they were for additional support then what would stop everyone doing it?

peer self-ID is commonly accepted in the autistic 'community

Only because if you dare speak out against it you’re called a literal nazi and kicked from the groups. I’d bet a lot more formally diagnosed autistics do not accept self ID than actually admit to that.

@Clymene good for them. My post already covers the point that not all agree with Self-ID.

It's a perspective that exists with accompanying rationale, which for NT people posting on here that aren't aware of it, it is useful to be.

DS was diagnosed with dyspraxia at pre school age and was told he had some autistic tendencies but not enough for a diagnosis. Throughout school no one ever mentioned that they suspected ASD but did know about his dyspraxia. I stupidly thought that he can’t be autistic because he’s been diagnosed already and was told he doesn’t have it but the last couple of years I’ve realised that the person who diagnosed DS could have been wrong and autism presents differently at different ages

Big drip feed there^^. I think you'd have had more help from people if you'd mentioned all that earlier rather than going down the self identifying route.

I think I just wonder if DS doesn't go for a diagnosis will it be a bad idea
(He would go for an assessment as to if he qualified for a diagnosis of ASD specifically.)

If it significantly impacts his life, IMO it's generally not wiser to try and pretend to be bad at being neurotypical if you're visibly different. Better to be good at being neurodiverse. If it doesn't significantly impact, it's already been explained it isn't a get out of jail card.

Dc doesn't have 'reasonable adjustments' in place, it's more about differences and communication issues, being accepted and negotiated when needed.

From my DC: "the biggest reason why having the diagnosis in place in a school setting is important, is actually when communication with line managers goes wrong!"

" A school is not a normal employer even if it technically is. Fundamentally a school is a provider of a service to it's pupils. Any reasonable adjustment to an adult that removes part of that service to those pupils is a problem, but there are plenty of self serving crap schools. Only work in one whose ethos you can believe in."
"However, you can have all the reasonable adjustments in the world, but you can either hack year 9 or you can't, and they know it!"

Wow...just wow! This thread is O@natureleaves really??

He has dyspraxia, which is also a disability, so he can request reasonable adjustments for this.

Dyspraxia doesn't just affect coordination, it can cause difficulties with organisation, time management and other executive function skills. People with dyspraxia can also have sensory difficulties.

My DD has both ASD and dyspraxia, and her dyspraxia affects her just as much as her autism does. People trivialise dyspraxia, and I don't think it gets the same "recognition" as other conditions, but it can be very difficult to live with.

As he has reached the age of 21 without being diagnosed (presumably he has been a student at at least 3 different schools / college in his life) then he does not have ASD?
Also, if he, as you said, waited until he was an adult to tell you of his self-diagnosis surely you would have spotted this before when he was growing up?

@GCAutist that sounds extreme. I'm not stating for or against self ID really, apart from for formal diagnosis for which I think it's important you can't...hmmm interesting, might have to research why so militant.

Firstly it's up to him, and secondly saying to the university oh we think he might have ASD won't achieve anything . PGCEs are notoriously challenging, but part of that is that he should be assigned a tutor at university and then a mentor on placement, both of which he can talk to if he is struggling or has concerns. To be honest teaching is what it is, if he would regularly need time out of the classroom during a lesson then it's probably not the career for him, you can't just leave a class.

@Nayday 'nevertheless it holds more weight than a NT person being derisive about something they know little directly of. There's lots online around why this is the case, and it isn't for an able person to discount that perspective (ableism)'

Personally I think it's pretty fucking ableist to co-opt neurodiversity without diagnosis.