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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Encouraging DS to declare his ASD

151 replies

natureleaves · 02/08/2021 16:16

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.

OP posts:
NoYOUbekind · 02/08/2021 22:30

That's a pretty massive drip feed!

Dyspraxia is a disability within itself and I completely agree with the pp who says it's very often misunderstood and 'not counted', even more than autism.

In the learning environment, I think DS's dyspraxia impacts him much, much more than his ASD. Executive functioning, processing and memory in particular are really hard for him and (I imagine) will be hard for him in the PG as it's so fast-paced.

He can seek help/support for that right now, he doesn't have to have an ASD diagnosis.

As for self-ID-in... Aye. Well. It's a thing. Doesn't mean it's right.

Ijustknowitstimetogo · 02/08/2021 22:34

No it’s a formal diagnosis. People say they think they have all sorts of things.
Saying he thinks he has ASD doesn’t then mean it’s ok to walk out on a class.

DreamAboutSleep · 02/08/2021 22:42

Why would he declare that he has a condition that he has not had diagnosed? For what purpose? What a strange post.

DreamAboutSleep · 02/08/2021 22:47

@MumofSpud

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?
What? Loads of people aren't diagnosed until their 30s or even later because our healthcare is so useless. Not being diagnosed by 21 doesn't mean he isn't autistic. Hmm

But why would he want to tell the University that he has a condition that he has no idea if he actually has? This entire thread is mad. If he wants a diagnosis then he needs to go and get a professional diagnosis. You can't just decide you have a medical condition without the help of a doctor. Confused

Macaroni46 · 02/08/2021 22:57

@natureleaves I know this will be unpopular but if he's training to be a teacher, he needs to meet the standards, ASD or not. So it would not be appropriate for a teacher he's placed with to 'not be as harsh'.
The real teaching world is tough and there is no time for allowances. I wonder if doing a PGCE is actually the right path for him?

Nayday · 02/08/2021 23:07

@Clymene you seem to be mistaking me for someone who wishes to argue about the merits, or not, of self-identification. As I said, it's a perspective, that exists that some people with autism hold, and some disagree with. There is rationale for, and against it.

Grapesoda7 · 02/08/2021 23:08

If your son has a dyspraxia diagnosis, then reasonable adjustments will be made for him on his course.

BabyRace · 02/08/2021 23:10

@stripedbananas

In most Unis they test everyone for things like this including dyslexia, dyspraxia etc
Well that's nonsense. Testing is done by professionals and there's a huge waiting list for adults.
Nat6999 · 02/08/2021 23:18

Pay for a private diagnosis, then he will have it ready for uni, shouldn't cost more than £300 & if he speaks to a GP this week he could have an appointment by next week.

budgun · 02/08/2021 23:29

@Nat6999

Pay for a private diagnosis, then he will have it ready for uni, shouldn't cost more than £300 & if he speaks to a GP this week he could have an appointment by next week.

Where are you getting private autism assessments for < £300 Shock

Clymene · 02/08/2021 23:29

[quote Nayday]@Clymene you seem to be mistaking me for someone who wishes to argue about the merits, or not, of self-identification. As I said, it's a perspective, that exists that some people with autism hold, and some disagree with. There is rationale for, and against it.[/quote]
Forgive me for reading your post as an endorsement. I wasn't the only one who interpreted it that way.

But it's a derail and probably as boring for you as it is for me , not to mention being irrelevant, so let's move on.

UpTheLaganInABubble · 02/08/2021 23:46

@Nat6999

Pay for a private diagnosis, then he will have it ready for uni, shouldn't cost more than £300 & if he speaks to a GP this week he could have an appointment by next week.
Private diagnosis is £1200 where I am, and has a waiting list of over 3 months. (NHS waiting list for adults here is nearly 5 years)
Nat6999 · 03/08/2021 03:05

My friend saw the same consultant I saw on the NHS privately it was £300 per appointment & she went twice at £300. Appointments were in exactly the same format as mine & she got a diagnosis at her second appointment then he transfered her to NHS. I waited 20 months from referral to diagnosis on NHS.

TeenMinusTests · 03/08/2021 06:04

OP. My DD has dyspraxia, and I have regularly considered whether it is possible she has ASD as well (symptoms overlap) but keep ruling it out. I have PMed you re reasonable adjustments & how to handle it as a young employee.

NoIDontWatchLoveIsland · 03/08/2021 07:31

Is he happy, managing ok with adult life?

If he has got to this age and has managed school, social life, work etc without any adjustments, and without him struggling a lot to manage to cope with that....how likely is it he actually is autistic?

To be diagnosed as autistic you need to have very significant impairments across a "triad" of three areas: Social Communication, Social Interaction &
Social Imagination.

The impairments have to be be severe enough to be considered "persistent deficits", it would be having a really huge impact on him.

NoIDontWatchLoveIsland · 03/08/2021 07:34

Btw not all health organisations will accept private paid-for diagnoses.

A comparable situation is the one in schools where children who's parents pay for private dyslexia diagnoses often find they are not acknowledged by the school. I don't know anyone who has sought a paid-for diagnosis and not been given it! I do however know that it isn't always the diagnosis they thought they had, I know a few people who've gone in expecting a classic autism diagnosis & got sensory processing disorder or ADHD.

trumpisagit · 03/08/2021 07:51

@stripedbananas I am bemused by the idea of everyone doing an online test for dypraxia.
DS was diagnosed over months with an OT and a formal diagnosis from a paediatrician. I am sure he would ace any online test though as he is a computer whizz.
Also Dyspraxia can only be formally be diagnosed in children as it is a developmental disorder.

budgun · 03/08/2021 07:53

@Nat6999

My friend saw the same consultant I saw on the NHS privately it was £300 per appointment & she went twice at £300. Appointments were in exactly the same format as mine & she got a diagnosis at her second appointment then he transfered her to NHS. I waited 20 months from referral to diagnosis on NHS.

So it did cost more then £300 then Confused

Nayday · 03/08/2021 09:08

@NoIDontWatchLoveIsland as long as the multi-disciplinary team/psychiatrist complies with NICE guidelines the diagnosis should be accepted. It helps if a team also working with NHS referrals if used. If a diagnosis is rejected and it has been made by a professional able bto diagnose and within NICE guidelines it should be appealed. What usually happens in rejection is that the diagnosis hasn't been given within NICE guidelines - or the school or LA is chancing their arm.

Most likhe reason private assessments usually result in diagnosis is that the people doing them are at a pretty desperate stage, who wants to pay up to £5k if you're not damn sure something is wrong.
Schools don't need to 'accept' a diagnosis of dyslexia and can put adjustments in without a diagnosis - but if a parent is requesting adjustments that a school isn't/won't provide e.g such as a keyboard, then an EHCP is required from the LA - which states what adjustments the child needs. The dyslexia diagnosis would be provided as evidence of that need. There are many hoops to jump through, but they are worth jumping through if you have a need.

Nayday · 03/08/2021 09:15

OP, if your son wants to proceed with assessment, and he wants your help - take a look at Autism UK and some of the Facebook support groups, you'll / he will get specific advice on their. Late diagnosis isn't unheard of but your son is the key person in driving this...

annabell22 · 03/08/2021 09:17

Your son could take a look at posts by Pete Wharmby, @commaficionado on Twitter. He is a teacher and autistic. He has a website too.

Stoolpigeon21 · 03/08/2021 12:55

@NoIDontWatchLoveIsland

Btw not all health organisations will accept private paid-for diagnoses.

A comparable situation is the one in schools where children who's parents pay for private dyslexia diagnoses often find they are not acknowledged by the school. I don't know anyone who has sought a paid-for diagnosis and not been given it! I do however know that it isn't always the diagnosis they thought they had, I know a few people who've gone in expecting a classic autism diagnosis & got sensory processing disorder or ADHD.

This post contains a lot of misinformation.

The SEN and Disability Code of Practice (2015) is quite clear - there is no basis in law for a Local Authority to reject a professional diagnostic report simply because it was privately obtained.

Private assessments for dyslexia, ASD and ADHD are recognised providing the person carrying out the assessment has appropriate qualifications.

Stoolpigeon21 · 03/08/2021 12:55

This also applies to Student Finance England for DSA and employers

OlivePenderghast · 04/08/2021 10:05

Does your ds have a formal diagnosis of dyspraxia? He will be able to send his psychologists report for this to the University and will get reasonable adjustments. They will probably also give him an appointment with the disabilities/access team too where he could raise the possibility of ASD. If they think it is fairly likely then they may refer him for an assessment and help with the cost.

Here’s what it says on the Imperial College website and I’m sure other universities are similar: www.imperial.ac.uk/disability-advisory-service/current-students/splds-and-autism/diagnostic-assessment/

WhenZoomWasJustAnIceLolly · 05/08/2021 11:10

There is a lot of crap on this thread, OP. You would be better off looking to some of the autism Facebook groups for support.