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Would you diagnose - autism

38 replies

Unsuretoday · 31/05/2024 14:09

My DS is age 10 and I've wondered if he is autistic for a number of years. He is happy, doing well at school and we are super proud of him.

He does seem to struggle socially, but often doesn't seem to notice or mind being left out.

I'm not sure if it's useful for me to list the traits which make me think he may be autistic. When I've asked his school before (he was age 7) they said lots of people have traits of autism.

Is it worth getting a diagnosis? Or since he seems totally fine, should we just leave him be?

OP posts:
blacksax · 31/05/2024 14:12

Could he just be an introvert rather than an extrovert, and happy in his own company? If you do have concerns though, perhaps you could mention it to school again.

Unsuretoday · 31/05/2024 14:18

@blacksax That is definitely a possibility. There are no sensory issues that seem obvious to me.

As a young child he was obsessed with patterns and mark making and from ages 3 or 4 would happily sit down and write out lists of numbers. He is very mathematical.

More recently, he is very obsessed with why jokes in The Simpsons are funny. He doesn't understand why and we are having daily conversations about what the 'joke' is. He could talk for several hours about this - remembering the jokes and struggling to see the humor. His reading comprehension is very good.

Again, these might just be quirks unique to him and not indicative of anything.

OP posts:
OakleyStreetisnotinChelsea · 31/05/2024 14:21

Talking to school is probably a good start. I suppose it is what you want from it and what benefit, or not, your child might get from a diagnosis.

My dd manages well. She had no friends in primary but now a few years in to secondary she has a nice group. Not that any of them socialist outside of school!

Waiting lists can be long and coping mechanisms can start to break down as stress piles up. Eg GCSEs. The question is perhaps, would it be helpful to have the diagnosis so that reasonable adjustments can be made if they are required?

Dd's traits have become more pronounced as she gets older and sometimes her coping skills are not quite enough. At the age your ds is now she could just have been out down as a bit of an introvert oddball.

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Marblessolveeverything · 31/05/2024 14:23

Getting an assessment would benefit your son. He isn't going to get a diagnosis of not autistic.

And tto be very frank, social problems at ten can become absolutely huge problems as a teen.

itsgettingweird · 31/05/2024 14:27

Well your not going to get any support from a school that have the ablist attitude that everyone has traits of autism.

You are autistic or you aren't.

For a diagnosis of autism you have to meet criteria in 3 areas and this must also have an impact on daily functioning.

If you have concerns make an appointment to see the GP.

EggshellSpacesuit · 31/05/2024 14:27

He isn't going to get a diagnosis of not autistic.

Well, he might. My diagnosis was that I although I score quite highly on the diagnostic criteria, it's not enough for a clinical diagnosis of autism.

That's semantics though really and doesn't mean it's not worth pursuing diagnosis. As others have said, waiting lists are long, so why wait? And a lot of difficulties tend to show themselves/worsen around puberty (mine and my children's did).

Clawedino · 31/05/2024 14:30

No harm in getting assessed. I was assessed as a teen as I've always been very quiet. They decided I wasn't but probably have social anxiety. It can be useful to know either way I think. Getting the diagnosis (or not) doesn't change anything.

MuggleMe · 31/05/2024 14:36

It can take 2 years to get a diagnosis. I'd ask to be referred as secondary can be a challenge.

DoNotScrapeMyDataBishes · 31/05/2024 14:38

DD1 is on the waiting list for an assessment (both DD2 and myself are diagnosed) - my reasoning was that, although she's coped well so far, I know that the social demands of life are likely to ramp up dramatically over the next few years and I'd like to have her at least a decent way up the waiting list before anything happens when things start to unravel for her.

As for what use it is - I've found that my late diagnosis was absolutely life changing in terms of re-assessing my strengths and weaknesses, and also giving myself permission to forgive the socially inept younger me who screwed things up but never understood why.

cariadlet · 31/05/2024 14:46

Definitely worth pushing for an assessment as waiting lists are so long.

If he doesn't meet the diagnostic threshold, no harm done but if he does then you might get a diagnosis in time for him starting secondary school which is often when children who cope well in primary, start to struggle.

FWIW, I had a late adult ASD diagnosis and found it really helpful.
Having that while I was at school would have been even better.

TooMuchRainTonight · 31/05/2024 14:53

We were in a similar position - primary years were fine/good and we naturally accommodated but we kept wondering. Then combo of covid and transition to secondary school was really hard and the masking must have got harder etc and it pushed us forwards to diagnosis as we wanted to preempt a crisis which we could see would happen.

I had also been talking a friend with a couple of adult SEN diagnoses who deeply resented it not being caught when they were young. I realised I didn’t want my child to suffer through and then turn to me as an adult and ask why we did nothing when we had always suspected. Getting the diagnosis for my child at 12 has been nothing but positive so far.

The secondary school SENCO said they often get loads of kids - particularly boys - who start struggling in years 7 and 8 but who seemed fine until then.

Unsuretoday · 31/05/2024 14:54

What would be the first step to getting a diagnosis?

How would you tell your child why they are going to talk to someone?

OP posts:
TooMuchRainTonight · 31/05/2024 14:58

Also worth saying that even though I had long suspected they were autistic, it was only when filling out the assessment forms that I realised so much of their “other” behaviour was autism related too. I just didn’t recognise it as such as it was subtle and I wasn’t so clued up on the different ways traits can look.

DoNotScrapeMyDataBishes · 31/05/2024 15:01

Unsuretoday · 31/05/2024 14:54

What would be the first step to getting a diagnosis?

How would you tell your child why they are going to talk to someone?

First steps depend on your area - talking to your school SENCO regarding how the process runs in your area would be a good plan... some areas needs GP to refer or school SENCO, some areas I think you can self-refer; but you're likely to have to fill in a huge form that will drive you blooming insane.

For us it was different as DD2 was fairly young diagnosed and we just left it matter of fact throughout as she got older so it wasn't a "big conversation" to have at any point (she has a few ND conditions). For DD1, we've just mentioned it as "you know that me and your sister are autistic... we think you might be too so you're on a huge waiting list to have it looked into" and she just grunted "oh ok" and returned to wittering on about Taylor Swift. We do make a point of having children's books around the place where there are neurodivergent main characters just to normalise it a bit (I bloody love A Kind of Spark which is currently onto season 2 on CBBC) as well.

TooMuchRainTonight · 31/05/2024 15:05

Unsuretoday · 31/05/2024 14:54

What would be the first step to getting a diagnosis?

How would you tell your child why they are going to talk to someone?

Talk to the SENCO again and ask them to do a referral. We got the primary school to do it and they did it even though they said they didn’t see any evidence themselves.

I sowed a lot of seeds with my child for a few weeks about brains being different etc and then shared the story of my friend who wished they’d known when young and said maybe we should talk to someone about why you find x hard so you don’t have to go through that. They were super keen to do it by the end especially as it involved a day off school!

BogRollBOGOF · 31/05/2024 15:12

Unsuretoday · 31/05/2024 14:54

What would be the first step to getting a diagnosis?

How would you tell your child why they are going to talk to someone?

DS was 8 and I talked about it being a way of finding out why he finds some things so difficult.

I wasn't expecting our diagnosis to be made when it was and the consultant to be so definitive. I remember driving home and likening it to when I drive DH's car; I'm still driving the car as I would my own, but I have to put extra energy/ effort into remembering how to manage its differences while driving rather than getting from A-B on autopilot and the controls feeling natural.

It made sense to him and it wasn't about definining what he could/ couldn't do, more recognising the effort it costs him.

If he has the range of traits at a level that impairs his way of living in a "normal range" I'd be seeking diagnosis. The gaps can often open up as peers mature differently and demands increase.

SerenityNowInsanityLater · 31/05/2024 15:23

It's a big thing because to him, going down the assessment route on its own might be like pinning a label on him he may not be comfortable with sidling up to. He might feel like there is something 'wrong' with him. I say this because having raised one child with autism, my youngest, it's very clear to me that my middle child is on the spectrum. She's 14 and her school's psychologist said to me, for the first time a couple of weeks ago, that she's beginning to realise that DD may actually be displaying signs of autism. I've often thought about this over the years, and I've been fairly certain that DD is on the spectrum. But I've had to tread very carefully. Some children are ok with being assessed. Others may feel a bit 'persecuted'. When I tried to approach the possibility of assessment, DD did not respond well. That was a couple of years ago.
So just know the lay of your son's land, emotionally, before you broach the topic of assessment. It's bigger than we realise (especially for older children). From ages 10-13, it takes so little for children to feel 'othered'. Those are tender years. We feel so exposed to the world at that age.

Recently my DD did say, "Sometimes I wonder if I am on the spectrum. But I don't really want a diagnosis because I'm sort of just comfortable with the way things are. I don't want to get too deep into it and start identifying as autistic." She may change her mind. I don't want to push her. So this is her. But her friend, on the other hand, was totally liberated by her diagnosis at the age of 13. It was life changing, life affirming! She finally felt comfortable in her own skin.
So it lands differently for each child. Just, take some time to prepare your son and talk about it together. It's a big thing.

All that said, having had the experience of raising one diagnosed child helps me parent better, read the room better, understand the situation better, use language more accurately, wisely, and with care. I take care of how I approach him... and people in general. Your son's research of Simpsons jokes (which has led him to analyse and question what it is that makes them funny- I really like this!) is very much the mindset of my youngest; an analytical, contemplative, questioner of life, which I love. My youngest happens to love The Simpsons because of the jokes! Our two would probably have really good playground talks about their opposing views, yet similar interest (for different reasons) in The Simpsons. My son's 10 too!

I think assessments are great because they can give parents and other people in the sphere insight into a child's behaviour that may have seemed nebulous, leaving the child to be misunderstood. Assessments help us create our own map of our child's inner workings. Also, great understanding, empathy, and patience as a parent. I know when to push, when to pull, and when to stop. I know the lines I cannot cross. You really start seeing the world through a sensory lens and it changes things. I was so scared, years ago, when my son received his diagnosis and all of the unknowns that came with that. All I could do was love a mother's love. How his autism would manifest itself wasn't for me to know or have control over. Scary... and calming, all at once. Having a child with autism has made me an exceedingly patient person. And I know how and when to ask for more support and input for my son at school.
A diagnosis gives you more leeway and more volume when you need to ask for that additional support. It is certainly helpful. I would pursue it for sure, if your son is ok with it. I hope your son will be comfortable. I know that with autism comes anxiety and a bit of hyper-fixation. So, hopefully, assessing him won't encourage that anxiety. Best of luck to you. It's a bit of a long pathway but worth it if you can get on it.

Marblessolveeverything · 31/05/2024 15:24

I would also discuss how you know he is getting older. And that you know having all the resources/tools to navigate teen years is an advantage. This is simply one way to identify if there is anything that can be of help.

Does he have any friends/family members where he is aware of autism ?

SerenityNowInsanityLater · 31/05/2024 15:31

Yes, and as others have wisely pointed out, the needs change with age. And puberty can be a bit of a doozy, apparently. My son sort of sailed through his autism with all of its tics, kicks, and flapping in the early years. All of that has calmed down and the physical traits are rarely apparent. What's starting to come to the fore are more emotional needs, greater anxiety, greater fear of the world around, and the notable distance from early years friends as they realise he's different. It's not a terrible thing at all. It's just 'there'. As life becomes bigger and fuller and rounder and more, my son's autism shows itself differently. I'm sort of bracing for the secondary school shift which will probably be more of a jolt for him than his neurotypical friends. So to have that assessment, or at least be on the pathway of assessment, will feel really supportive, for you especially, OP.

queenofthewild · 31/05/2024 15:32

DS went on the waiting list for assessment in Y5. He is now Y8 and has just had his diagnosis.

The diagnosis hasn't really changed anything for him or us - he's been on our lives long enough that we know his triggers and comforts and can support him to manage things he finds challenging.

However, secondary school has been a huge change for him. A positive is that he has found his own quirky little tribe. The negative is that he really struggles when his classmates become unruly (which isn't unusual when a supply teacher comes in). The diagnosis has allowed him to access a time out pass, so that he can leave class when it becomes overwhelming and work in the library instead.

There's no harm in going for an assessment. And the positive of a diagnosis in an older child/teen is that you can explain to them that their diagnosis is like any other medical condition. It's entirely up to him whether he shares his diagnosis and who he shares it with.

Ciderlout · 31/05/2024 15:35

It will depend on where you live whether you can access a diagnosis without school referral etc… but as he’s doing well there they’ll probably continue to dismiss it.

Obviously ASD is a huge spectrum and more significant and higher the need, the more likely a diagnosis will be made sooner. The waiting lists in some areas are years long so in my experience they prioritise the most severe cases.

It might be worth going to your GP to see if they can refer you and LO

Droolylabradors · 31/05/2024 15:41

Best thing we did. We had suspicions raised when he was 10 but decided not to do anything. Aged 12, his secondary school brought us in for a meeting to suggest we test him.

Our medical insurance covered the private cost of £2000. Got him tested three weeks after school suggested it.

He was so so happy when he realised why he was differed to his peers after years of asking us.

Some things which really stood him out from peers:
Not sleeping alone
School refused age 8 and very sick with anxiety
Preferred to stand on the playground and play a game with himself
Not physically confident like other boys - at a laser quest party he snuck out to stand with me/wouldn't ever sit on a bike let alone learn to ride
Specific obsessions at any one time
Hygeine phobic. Really struggle with washing/touching soap/smells/feelings of things
Didnt go anywhere near soap or anti vac gel when he returned to school after covid! Thankfully school were sensible and never forced it.

He is now so obviously autistic I dont know how I missed it!

Eye contact/obsessions/very limited social awareness, wears the same tshirt and I have to fight to wash it/few friends but v v happy.

Droolylabradors · 31/05/2024 15:46

I should have added - it has made a massive difference with school.

He has LSA support, has been allowed to select one fewer GCSEs to allow him extra time, the school medical centre know him well and can identify the difference between sickness and anxiety 'sick feeling'.

He has some uniform modifications which help him with the way his clothes feel too.

Unsuretoday · 31/05/2024 16:50

@Droolylabradors

A lot of what you described about your DS sounds very similar to mine.

  • mostly plays by himself at school. Seems content with this.
  • hygiene obsession
  • singular obsessions

He seems to be in the mostly 'fine' emotional state. Happy enough, content, but mostly the same emotional state if that makes sense. Unless he is unhappy, then he can become very upset and cry

OP posts:
Hotttchoc · 31/05/2024 16:59

I'm in my 30s and considering seeking assessment for autism as it does affect my daily life and I think it will help me to know. Whether it would have helped me at school in the 90s to have a diagnosis I'm not so sure. Times are different now and you should consider it if you think it will help him.