School want to refer my 9yo for autism assessment. I’m very doubtful he’s autistic

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Looking for a bit of advice/thoughts.

Since toddlerhood, DS (now 9) has had a few traits associated with autism (struggle with changes to routine, some sensory things, intense special interests) but I’ve never thought these have enough impact to warrant assessment.

As he’s got older he’s got more flexible with things like changes to routine and at home we generally find him fairly easy (although he does have his moments!)

He’s always coped pretty well with school although they have recognised he needs a bit more support in some ways (to do with coping emotionally rather than academically). Since starting Y4 he has been less happy at school and they have had to put more into place to help him (particularly with the transition from home to school).

We recently had a meeting with his teacher who suggested referral to CAMHS for autism assessment. We’ve decided to cooperate with this, but I’m very doubtful CAMHS will be interested. To me he doesn’t seem to be struggling enough iykwim? Though I am a bit worried about how he’d cope with secondary school. His social skills are pretty poor and he has trouble handling emotions.

I just don’t know what to think. Could he really be autistic with me just not seeing it? Or are school just being overzealous?

My dc was also referred for an ados test when he was about 8yrs old. Though he had some traits, like you I was certain he wasn’t autistic but we went ahead with the test anyway, just in case and to rule it out.
Test concluded he wasn’t autistic, but a bit immature for his age with OCD. There’s nothing lost by getting the test done and you’ll eliminate speculating forever.

My DD is 6 and has ASD and ADHD. Autism can be a part of a persons identity in the same way being gay can. It's not a case of being severe enough for a label.

That being said, If your child needs support, a diagnosis can help open doors.

DD to most people doesn't seem autistic. We've embraced it and to be honest I feel so lucky to have a child with autism. It's an amazing thing.

At that age I would ask my child in an age appropriate way. Tell him stores of positive autistic people and see if he thinks he identifies as autistic. Then take it from there. Just an idea.

Thanks Misandei. Were you offered any help/advice with regard to the immaturity and OCD?
I do think my son would benefit from some help, just probably not an autism diagnosis

Also camhs can be fab. We had a private diagnosis but camhs support has been fab.

We have a similar tale with DS, who was diagnosed with Asperger's Syndrome in year 3. We had been aware of autistic traits since about 18 months old but didn't think there was enough to warrant a diagnosis. His nursery and school were very nurturing and supportive and he coped well at both, but a teacher nudged the diagnosis process for us in year 2. At the time I agreed it needed doing but thought he'd be borderline at the most. It turned out he was well into the score for autism on the ADOS test. Which came as a huge shock at the time, even though we knew he was different to other children his age. It turned out to be one of the best things we could have done and I am so grateful she nudged us along, he had an EHCP by the time he went to secondary school, he is 16 now and thriving.

I get that it’s an identity you’re born with, but diagnosis does take into account how severely your ‘traits’ impact on your life doesn’t it?
I haven’t talked to my son about it and given that I don’t think he’ll get a diagnosis I’m not planning to yet. I don’t want him to be disappointed!

Also bear in mind that what you think is coping / doing well might actually be masking. Which can be harmful to their mental health. What have you got to lose in getting all the help offered?

Diagnosis is ASD or not these days. There no level of traits. It doesn't work like that. Honestly look into it further there are tonnes of books. Mostly written by autistics who were diagnosed in adulthood and felt 'odd' or out of place their whole life.

Thanks Expletive, that’s really interesting. His school has been very supportive and nurturing and this is the first teacher he’s had who’s a bit more strict, which is at least partly why he’s struggled more this year.

Glad you’ve had a good experience with CAMHS parttime.
I don’t think he’s odd, but he does come across as odd in some settings.
Yes he may be masking without me being aware I suppose. But he’s most happy and ‘normal’ at home, where presumably he’s being himself

Is he your oldest or only child? Mine is my oldest and I still don't always realise that our normal isn't the same as other people's normal. As adults we can compensate for our children's difficulties without realising we are doing it, their peers are leas likely to so they cope better at home than at school.

Yes he’s my oldest (I have a younger one too)

Were you offered any help/advice with regard to the immaturity and OCD?

With regards to the immaturity, CAMHS just said he was just lacking in confidence and once he was grown a bit more will be okay and he is . With the OCD he also had ADHD, so medication for the latter. The former they offered therapy.

I think that there is a possibility you adapt things at home without even really being conscious of it.
If your Nursery and early years at school have also been making adjustments, then that is really positive but it might also be giving a false picture.
However, if he doesn't have autism, he won't be given that diagnosis. If he does, then it is generally better to know - for him, as he gets older, but also to open doors to get support as life gets more complicated.
As dc hit puberty, and all the hormones of teens kick in, social situations become more complicated.

I remember thinking exactly the same when concerns were raised about my two at the start of year 4 and thought school were totally over-reacting to 1 or 2 incidents. Thank goodness I went along with it because in the following year or so they really fell apart and needed a lot of support to the extent that both ended up in special schools.

But on the bright side because ds1 got good support through secondary it means he is coping really well at the moment (touch wood) and back in a mainstream college for sixth form and even apparently has some friends! It's not the diagnosis that is needed but the support but you don't tend to get the correct latter if the former is not in place.

That's exactly it One, getting the diagnosis was what gave me the confidence and evidence to go out and fight for the right support.

Immaturity - many kids with AN appear to be immature, it's quite common for them to present emotionally around two-thirds of their chronological age. It would help immensely in schools if they understood that.

Re diagnosis, it is a full medical diagnosis, not just one person's opinion and can open doors to support. If he's not autistic, he won't receive a diagnosis. If he is autistic, he was born autistic and he'll be autistic for life, he'll be autistic whether you go ahead with a diagnosis or not.

A diagnosis can give a child a reason for them being different, do make sure you get the message across about different is not wrong. Mac and Windows work differently, but they are both computers and can do the same things. Left handed and right handed people can both write but they do it differently, neither is wrong or better or worse than the other, they do the same thing, but in a different way.

Could he really be autistic with me just not seeing it
Every parent (including me) who has previously had no experience of additional needs or autism or its different presentations has wondered this and the answer is a huge yes absolutely he could be autistic without you realising, because subconsciously you make his home environment one which doesn't challenge him and you support him with social interactions and situations outside home. Parents often just think he's 'quirky' or 'needs a bit of help' or whatever phrases they use to justify his differences to his peers. Parents can be the least objective observers of their own children. Some families have undiagnosed autistic relatives, so they think their child's behaviour is completely ordinary because Uncle Fred does the same things or he's just like cousin Pete or his Mum or Dad's just the same.

Thanks everyone, this is really helpful. I’m going to keep an open mind and see where the process takes us

If he’s autistic then you definitely want to find out now, before secondary school. As a secondary teacher I know of so many kids who have fallen apart at secondary school and then been diagnosed, whereas if they’d had the diagnosis, appropriate preventative support could have been put in place from the start.

Primary is quite a cosy place with routines and teachers who know the kids inside out. Secondary is not. Plus puberty. Plus increased expectations of social interactions.

I get that it’s an identity you’re born with, but diagnosis does take into account how severely your ‘traits’ impact on your life doesn’t it?

This is true, but it's also situation specific and partly in the eye of the beholder. DD is autistic but I totally didn't see it. It was her nanny who pushed us to investigate but she actually got a diagnosis without any pushing from us. I would say at home she really doesn't struggle much. Some intense interests, can have trouble switching from one thing to another (especially at bed time when she's tired), but generally a delight - very fun, funny and happy. She also really enjoys school and has friends there and outside (currently Y1)

What I've realised is that I didn't spot her traits because I'm quite similar myself - as are members of my family and OH's family - so we very easily accommodate the things she finds difficult at home. We aren't taking her to noisy shopping centres every weekend, because I also hate them. We give her notice when we're going to go out and what we're going to do, because I'm also a person who likes to have a plan.

Although I would still say most people probably don't see DD as autistic (and I have friends who I know are skeptical), her school (and us) knowing has really helped us to parent her and teach her better - recognising some things we should just not be pushing her to do at all if she doesn't want to (noisy parties, drumming day at school) and other things that she can do with a bit of extra support and encouragement (e.g. some physical and learning stuff).

Secondary school is a massive leap in "executive function" requirements at the same time as their social world gets more complicated and demanding, so agree with others that this is worth investigating now, so you are ready to put supports in place for secondary transition if he turns out to need them.

If school are recommending an assessment, I would say go for it. My daughter was on the pathway from about Year 1. I never thought then that she was autistic - just that she was struggling socially and emotionally a bit more than other girls her age. The wait for an assessment was around 2 years. In that time a lot more differences became evident, as well as how she "masks" at school. Bearing in mind the wait you may well have, i would suggest that if they want to refer, let them. My dd is going to start secondary in September, and it's now so clear how she socially can't keep up with her peers, I'm terrified for how she's going to cope.

noble is right, if he is autistic get the diagnosis before secondary school. Ds is 15 and was diagnosed in September last year. It's not been easy at all and he now as significant mental health difficulties alongside his autism. How I wish I had pursued a diagnosis earlier.

I didn't think ds would get a diagnosis, but he did at the end of Y4. He's not as obviously affected as his older brother but the diagnosis was really helpful as it enabled us to get a EHCP which meant we could pick his secondary school.

Everyone agreed he could thrive in a mainstream secondary if he went to one with a welcoming chilled-out ethos that wouldn't scare him with rigid discipline. The EHCP meant we could have that whereas otherwise we'd probably have been too far away from the sensible options and stuck with the strict low-ambition zero-tolerance academy.

Gosh Jackparlabane, that type of secondary is exactly what I’m hoping to be able to find for DS.

I’m surprised to hear a couple of you say your child got an EHCP with only ‘mild’ autism - I had assumed that wouldn’t be on the cards for us even if he gets a diagnosis. I suppose his needs could intensify as he gets older though

Well, that's the thing, DS's autism is fairly mild in some respects but it was affecting him more as he got older. The diagnostic process also picked up dyspraxia and language issues which I hadn't suspected but turned out by secondary school to be having a far bigger effect on his ability to access his education than the autism was. Other parents with DCs with SNs were telling me to apply for a statement (as an EHCP was then called) for several years before I bit the bullet and did it, I doubted for a long time he'd get one but he did. I also hesitated over applying for DLA but he got that too.