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Preteens

Parenting a preteen can be a minefield. Find support here.

What made you get your child assessed for ASD

48 replies

Worriedmummmm · 24/07/2024 23:41

My to a lovely 9 year old boy. He’s always had ‘quirks’ - I put this down to his intelligence - exceptional, but not extraordinary - I imagine 1 in a 100 sort of bracket. I have previously read that high intelligence is often paired with high emotions so attributed a lot to this.

After a little reading for an entirely separate reason, I suddenly realised that a number of his ‘quirks’ are ASD traits. Which makes a lot of sense. He is intellectually very smart, but has always been emotionally immature; could read at 3 (and I didn’t really teach him; I taught him the alphabet and the concept of blending sounds. He was then reading. By the end of the same week that we started blending), but would choose baby books until he was probably 6 or so. His interests are slightly young, and have always been so, and he wants to be young; he talks about not being little with a lot of sadness, and is very young in himself. Until quite recently he wanted to be an egg that could talk. All cocooned and cosy. He used to talk about this a lot. Sounds weird, but is very normal coming from him!!! He has fixations on things; he knows a lot about a few topics which he will monologue about without noticing his audience has no interest! He also can’t moderate his volume. At all.

He has one friend who he was obsessed with; we have worked on this being healthier. The friend is also good at boundaries and we are very open about the friend asserting this, and with the parents too.

He sensory soothes a lot. He did lots of ‘odd’ things when he was younger which he has stopped. Now it’s a lot more subtle so I’m only now joining the dots. So he wears feminine clothing - he won’t wear certain things which he thinks are for ‘girls’ (head bands, skirt/dress/certain colours) but he does wear a lot of his sisters clothes which are fluffy or furry, he has grown his hair long so he can suck it, he has started to murmur or groan when watching tv. He wears bed socks during the day come rain or shine. He DETESTS getting wet and or cold. But sometimes will allow it, for example the pool, but usually with rules, like he doesn’t get splashed and his hair stays dry. He is also quite self-centred but in quite an innocent way; he just doesn’t think of others. When told to consider x y or z, he will often be hugely empathetic. It just didn’t occur to him to consider it. This applies to anything and everything really; I have other children so this conversation has been going on for his whole life. He will literally move a sibling so he can sit next to me for example ‘because I want to sit next to me.’ He has learned that this doesn’t go down well, but this doesn’t stop him from doing it every. Single. Time.

And the emotion. Wow. When he’s happy, his whole body is alive with joy. But when he’s sad, it’s tears and the end of the world. He cries most days. About nothing. His ear getting wet in the shower, his hair being washed, something tiny at school which he has saved up to get sad about, you get the picture. He is easily comforted, again like a small child. Cuddles and everything’s resolved. Overall I’d describe him as happy - the sadness are like clouds that pass over the sun; once they’re gone it’s all forgotten. Until next time he’s sad, when he’ll be sad about every past time!

These are just a few of the things. They all create a picture which might sound negative, but actually he is a pretty amazing little kid. His intellect leads him to be so quick at comprehending it’s delightful. He has a particular skill which he is years ahead on, and he has an amazing imagination. His nature is such that he has a very involved world, and he brings you into it.

So whilst it’s occurred to me that he might be neurodivergent, I’m wondering whether it would actually help him to get assessed, as we have parented to his needs anyway, and he finds schoolwork very easy, and he manages his behaviours really well at school. He doesn’t really understand rules, or rather he doesn’t have an understanding of rudeness, but he does have an excellent memory, and when told x is rude, he will then avoid it. He doesn’t generally get in trouble in school, and as he gets upset when anyone gets told off ‘for no reason’ it gives me a good opportunity to explain that actually said kid was being rude/naughty, and he then knows to avoid it.

So, if you have a child like mine (and I fully appreciate that he may not have asd; I’m not a professional, and many of these are neuro-typical traits also) what was it that made you seek a diagnosis?

I don’t want to seek a diagnosis for him for no reason, but at the same time, he’s only 9 now and I don’t want to be in a position where things get really difficult in a few years time and we then need to wait a further few years due to waiting lists. They are 2-3 years around here and we cannot afford private assessment.

Possibly clouding my vision is I have recently realised that I probably have ADD; suspected for a few years in terms of some of the more obvious characteristics but only recently realised what a major impact it had on me for school work, and still does when being given information in certain ways. This understanding was literally a friend telling me about her kids diagnosis from his experience in the classroom - absolutely lightbulb moment for me. I was just seen as bright but lazy, and failed to achieve potential in exams, but did OK so never met any thresholds. I’m very articulate hence it was put down to laziness, and I was pretty lazy too, cos things like listening were too hard. Actually my way was harder, eg I’d rather figure out the maths formula than listen to the teacher explain it! I’m keen he’s not ‘missed’ like me.

OP posts:
Abawaba123 · 07/08/2024 09:16

AngelusBell · 07/08/2024 02:25

There is no medication for autism, only ADHD.

That’s true but if your child has difficulty sleeping (common in autism) you’re a lot more likely to get melatonin from your Gp if they’re diagnosed. Also anxiety and depression are very common in autism and the type of therapy will need to be different to reflect those needs.

Girliefriendlikespuppies · 07/08/2024 09:25

I think for your Ds op I would want a diagnosis, it means you will hopefully be able to ask for more support when he goes to secondary.

It may also help your Ds understand himself a bit better as he gets older. From what you've described he definitely sounds autistic with sensory issues.

I tried to get a diagnosis for my dd who is very similar to your ds, unfortunately they decided she was borderline and we didn't get a definitive diagnosis. Girls are generally better at masking though.

I think a diagnosis of autism is a better label than quirky/different/weird/sensitive etc.

AngelusBell · 07/08/2024 09:27

Abawaba123 · 07/08/2024 09:16

That’s true but if your child has difficulty sleeping (common in autism) you’re a lot more likely to get melatonin from your Gp if they’re diagnosed. Also anxiety and depression are very common in autism and the type of therapy will need to be different to reflect those needs.

This is true.

AdiLane · 07/08/2024 09:49

AngelusBell · 07/08/2024 02:23

Understanding by the child why they are different.
Protection from bullying.
Anxiety often peaks in Y7/Y8 and attendance drops - school has to make reasonable adjustments.
Support for difficulty in transitions around school.
Exam access arrangements.
Lower risk of exclusion/self-exclusion.
Lower risk of depression later on.

Is the difference made because of a diagnosis though? And how?
For instance, how does a diagnosis protect against bullying? Bullying is a much wider issue and takes much more than a diagnosis to address.

All of those things you have listed can be addressed by understanding the individual and providing the strategies to support.
The most successful child I worked with, identified with a range of needs aligned to ASD, was successful because of the staff who supported him, with their detailed evaluation and accurate plans to help him implement the necessary strategies to meet his needs. This was a child that coukd nit spend more than 10 seconds in his classroom, with serious meltdowns.
The strategies were about him as an individual, not about ASD, which, of course presents differently in everyone. There was nothing in an ASD diagnosis that would point to a break through for him being that if he held his door key, he felt secure. With it he could manage in school for 10 seconds, then 20, then a minute.

More than school support, the support his parents gave was impressive. Time, effort, planning, shared learning, evaluation, small steps, planning ahead…etc etc.

Would a diagnosis have made a difference? He is uni age, just completed his degree with 1st class honours. Obviously he has been supported to learn strategies to help him stay in school, to transfer to secondary, to move to uni. All done without a diagnosis.

This has to be balanced with the limitation a diagnosis can bring in adult life.

AngelusBell · 07/08/2024 10:12

AdiLane · 07/08/2024 09:49

Is the difference made because of a diagnosis though? And how?
For instance, how does a diagnosis protect against bullying? Bullying is a much wider issue and takes much more than a diagnosis to address.

All of those things you have listed can be addressed by understanding the individual and providing the strategies to support.
The most successful child I worked with, identified with a range of needs aligned to ASD, was successful because of the staff who supported him, with their detailed evaluation and accurate plans to help him implement the necessary strategies to meet his needs. This was a child that coukd nit spend more than 10 seconds in his classroom, with serious meltdowns.
The strategies were about him as an individual, not about ASD, which, of course presents differently in everyone. There was nothing in an ASD diagnosis that would point to a break through for him being that if he held his door key, he felt secure. With it he could manage in school for 10 seconds, then 20, then a minute.

More than school support, the support his parents gave was impressive. Time, effort, planning, shared learning, evaluation, small steps, planning ahead…etc etc.

Would a diagnosis have made a difference? He is uni age, just completed his degree with 1st class honours. Obviously he has been supported to learn strategies to help him stay in school, to transfer to secondary, to move to uni. All done without a diagnosis.

This has to be balanced with the limitation a diagnosis can bring in adult life.

Edited

My own experience with autistic family members, a Master’s level autism diploma, autism specialist for over 20 years, ten years as a senior autism advisory teacher in a local authority, leading two autism resource bases in secondary schools, SENCO in two large secondary schools, and now tutoring adults with autism has led me to believe that diagnosis does make a positive difference, the earlier the better.

AdiLane · 07/08/2024 10:44

AngelusBell · 07/08/2024 10:12

My own experience with autistic family members, a Master’s level autism diploma, autism specialist for over 20 years, ten years as a senior autism advisory teacher in a local authority, leading two autism resource bases in secondary schools, SENCO in two large secondary schools, and now tutoring adults with autism has led me to believe that diagnosis does make a positive difference, the earlier the better.

I have a similar long background and vast experience in Education at senior levels. And of course as a parent.

A diagnosis requires quality, ongoing support. The quality of the support is the most defining factor.

There is a concern that ‘diagnosis’ is a magic bullet which will solve everything. Clearly it isn’t.

owladventure · 07/08/2024 19:22

AdiLane · 07/08/2024 09:49

Is the difference made because of a diagnosis though? And how?
For instance, how does a diagnosis protect against bullying? Bullying is a much wider issue and takes much more than a diagnosis to address.

All of those things you have listed can be addressed by understanding the individual and providing the strategies to support.
The most successful child I worked with, identified with a range of needs aligned to ASD, was successful because of the staff who supported him, with their detailed evaluation and accurate plans to help him implement the necessary strategies to meet his needs. This was a child that coukd nit spend more than 10 seconds in his classroom, with serious meltdowns.
The strategies were about him as an individual, not about ASD, which, of course presents differently in everyone. There was nothing in an ASD diagnosis that would point to a break through for him being that if he held his door key, he felt secure. With it he could manage in school for 10 seconds, then 20, then a minute.

More than school support, the support his parents gave was impressive. Time, effort, planning, shared learning, evaluation, small steps, planning ahead…etc etc.

Would a diagnosis have made a difference? He is uni age, just completed his degree with 1st class honours. Obviously he has been supported to learn strategies to help him stay in school, to transfer to secondary, to move to uni. All done without a diagnosis.

This has to be balanced with the limitation a diagnosis can bring in adult life.

Edited

What specific limitations does a diagnosis bring in adult life?

And are they even guaranteed to still exist a decade or two down the track when they would apply?

Compared to the adulthood legacy of poorer educational outcomes, struggling with unmet needs and being unable to access support?

Adaptive parenting can be sufficient with a younger child and in a home setting. It's not going to be enough once they start encountering issues in the wider world that isn't prepared to adapt for them. And where people will be less understanding or empathetic.

JazbayGrapes · 07/08/2024 19:44

What specific limitations does a diagnosis bring in adult life?

May potentially be a barrier to specific careers. As previously mentioned - military. Or police. Or airlines. Where you need to have a flawless medical record. Anything "mental health" will not look good.

AngelusBell · 07/08/2024 20:14

JazbayGrapes · 07/08/2024 19:44

What specific limitations does a diagnosis bring in adult life?

May potentially be a barrier to specific careers. As previously mentioned - military. Or police. Or airlines. Where you need to have a flawless medical record. Anything "mental health" will not look good.

Autism isn’t a mental health condition.

owladventure · 07/08/2024 20:24

JazbayGrapes · 07/08/2024 19:44

What specific limitations does a diagnosis bring in adult life?

May potentially be a barrier to specific careers. As previously mentioned - military. Or police. Or airlines. Where you need to have a flawless medical record. Anything "mental health" will not look good.

https://www.npaa.org.uk/recruitment/

"Autism and other neurodivergent conditions are not automatically a bar to being a police officer – each case is judged on its merits as these conditions affect everyone differently. You would typically be asked for a report from your GP or specialist as part of the medical screening process. Autism would be an additional hurdle to overcome during the assessment process and initial training, which are significant challenges in themselves. Many neurotypical people are not cut out for a career in policing."

Recruitment Q&A | National Police Autism Association

I have a neurodivergent condition – could I be a police officer? Autism and other neurodivergent conditions are not automatically a bar to being a police officer – each case is judged on its merits as these conditions affect everyone differently. You w...

https://www.npaa.org.uk/recruitment

owladventure · 07/08/2024 20:32

He DETESTS getting wet and or cold.

Regardless of diagnosis, does this child sound like someone who would want to join the army? Or have a good time if they did?

There's a massive list of medical issues that could or would be a barrier to joining the army, including knee injuries and food allergies. Should parents try to keep all children's medical records "army ready" throughout childhood just in case the child grows up and wants to apply? "No, you can't play football Thomas, you might injure your knee and be unable to join the army in 14 years' time."

This is not a rational way to decide whether to pursue support in the present.

BeadyLeaves · 29/09/2024 22:21

For us it was about our child, as they got older, expressing that he felt different from other children and a concern that he was finding socialising difficult. He sounds similar to your son. He wasn’t having huge difficulties when he was referred but has had huge difficulties since.

Anisty · 29/09/2024 22:36

With DS2, we knew something was wrong from birth and he had multi agency support right through primary school. There was so much the matter, it wasn't at all obvious autism was the answer so he didn't join the ASD wait list til he was 9. Finally got diagnosed autism and learning disability at 13 (4 yr NHS wait) He is 25 now and it opened doors to him to meet like minded people, supported employment etc.

DD2 is cognitively able. Nothing too obvious as a child. Had pals, sailed through primary school. No behaviour issues.

Hated high school from day 1. Overdosed aged 16. Camhs useless. Seen 3 times then discharged, leaving us with a DD that looked catatonic at times.

Didn't know if deep depression or autistic burnout. Things fortunately improved massively on leaving school. Does not appear to be depression at all. Thinking autism and currently seeking private diagnosis.

Suffered lots of migraines and period pain at school - seems clearer now this might have been stress induced and dd has been masking. She was exhausted.

Has found like minded folks at college but hope a diagnosis will help her understand how she feels and give strategies to help.

Girliefriendlikespuppies · 30/09/2024 08:30

I think the benefits of a diagnosis outweigh the negatives.

From secondary age the differences really start to show and bullying was a major problem for my dd.

Understanding autism and how that affects dd has made explaining why my dd struggles with certain things a bit easier..

Worriedmummmm · 15/10/2024 14:59

Thanks all, I have made an appointment with school next week to seek their thoughts and will then contact GP. My dd is almost certainly autistic which is what caused me to wonder about ds. The now very rapid decline in my dd, which could not have been foreseen by school/me when she was 9 has clinched the need, as have a lot of your experiences.

OP posts:
ByTealShaker · 15/10/2024 15:05

I didn’t have to read your full post to think yep your DC is probably autistic. It is mainly an emotional, social and communication delay / disorder, so ‘immaturity’ would make sense, paired by hyperlexia. I’m at the early year stages with my son who has just been referred for an autism assessment (finally!).

At 18 months my son started to be able to correctly identify and say letters, numbers, colours and shapes, but almost zero social communication. If my son wasn’t so significantly speech delayed and unaware of social routines, I don’t think he would have a referral. A virtually non-talking 3 year old warrants intervention and an assessment. If he was more verbal then I’m not sure he would be assessed or have any other input because the LA really only look at individual need rather than whether a child may be autistic or not. In other words it might be a lot more difficult given that he’s verbal, no learning disability and it’s gone under the radar for so long. That being said, I still think it’s worth chasing up as a parent.

TheWomanWithTheStick · 15/10/2024 15:08

I think my DS16 is autistic, there are so many things that point to it, but I think that he would feel worse being diagnosed or even suggested to him that he's autistic. He often gets quite upset, tells me he feels sad and doesn't know why, and asks why he is so different from everyone else. In a way I want to get an answer for him, but I think it'll make him feel more anxiety than he has now, so I haven't done anything about it. I feel a bit in limbo with him.

SageBlossomBunny · 16/10/2024 03:25

From the experience of adults - I've only ever heard of a diagnosis as a poustive thing. In fact many wish they'd been told earlier as it makes sense of their experiences, especially that feeling different from other people. In a sort of "ah so that's why..." It's great to be able to learn about it and hear others experiences and move towards accepting as a difference and self acceptance.

I am surprised by some of the comments on this thread as I can't think why on earth you wouldn't tell someone. Bit like not getting someone glasses in case they can't be a pilot - but they still need the glasses!

Time and time again we hear of adults looking for assessment or diagnosis, wishing they'd known earlier and the relief of that self knowledge. There's huge waiting lists for adults too and so much awareness out therr now of the difference it makes to sense of self and coping and how important it is.

I honestly think it's wrong to withhomd that from someone. Bit like not telling someone they're adopted as people used to.

SageBlossomBunny · 16/10/2024 03:27

Also with uni you can access some things that might make the transition easier, earlier start etc.

Its certainly been easier for my diagnosed duaghter to access support /extra time etc at secondary than it has my undiagnosed one. She's looking at all 7-9s and super bright but the extra time to organise her thoughts is invaluable.

starray · 16/10/2024 03:46

JazbayGrapes · 07/08/2024 19:44

What specific limitations does a diagnosis bring in adult life?

May potentially be a barrier to specific careers. As previously mentioned - military. Or police. Or airlines. Where you need to have a flawless medical record. Anything "mental health" will not look good.

I'm sure I read somewhere that certain countries won't allow migration if you have a diagnosis.

Morph22010 · 16/10/2024 04:06

Mine was diagnosed at 6 after major struggles coping in primary so we are in a different situation. I would say that the main advantage to having a diagnosis is that if things do go wrong you already have that diagnosis and it’s one less hurdle to jump. Things started going badly wrong for my son in year one but by the time we got diagnosis, went through the hoops of ehcp tribunal and then getting specialist placement it was year 4, had things gone wrong in year 7 on the timescale it would have been year 10. I know support shouldn’t be based on diagnosis in theory but the reality does it’s hard enough getting with a diagnosis never mind without, although that will vary by school. Although if your ds is unlikely to need support ever there is probsbly not much point

LostittoBostik · 16/10/2024 04:44

I know this is an old thread but I'm following because you're describing my 7yo DD except I would say she's flourishing intellectually in some subjects but struggling in others.

She seems young for her age but she's also young in her school year so it's hard to have a clear comparison

Heywhoswitchedthwlightoff · 03/11/2024 15:19

The teachers at my daughter’s school referred my daughter. She had an incident in a bathroom where someone went ahead of her and she tried to drag her friend out by the ankles. Also sometimes running out of class with flight or fright. She has Asd and adhd. I think it helps you understand and my dd is taking meds to help her concentrate (i don’t like her being on pills but she says they help). Also it’s good to know as you can help them when they get older that you know. My dd is 12 and gets v anxious and doesn’t like crowds and loud noises. I don’t avoid crowds with her but it helps me to keep talking through these difficult situations that she will inevitably need to handle. The other thing I find odd is she doesn’t like the feel of paper! Who would have thought

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