To think my son may be autistic

[Lifethroughlenses]

My son is 10. He struggles with some sensory things such as strong smells, noises and discomfort and he is very squeamish generally (especially with food). He can’t deal with having multiple tasks to do at once and if something isn’t planned. Imaginative games have never been his thing and he only copes with creative writing at school by copying and changing stories he’s read. He finds it impossible to infer things from a comprehension but he does ok at English basically because he’s bright and can follow rules well (which seems to be the way they teach English these days) I.e. put in a metaphor, similar, use all five senses etc. He is not very organised and often forgets possessions for school. Gets very very stressed and anxious when late.

socially he’s ok with his friends at school but gets very uncomfortable if he doesn’t know people. But he is affectionate with parents, siblings and close family.

He clearly has some autistic traits that have become more apparent with age. AIBU to see someone to get a diagnosis or would you leave it on the basis that all kids have stuff they struggle with? Would it really benefit him to have that label if he was autistic? I doubt he’d get any help at school as he’s clever and can function educationally b

Sounds like it, tbh. He might not qualify for an EHCP but it's worth getting the diagnosis - it just helps you and others to understand what's going on. Though you sound pretty clued up already.

Sounds like my eldest. Just about got through Primary School and then crumbled after the first term if secondary (with an EHCP!) had 6 months of no school and then started a special school.

It's not a label, it would be a diagnosis if the doctors assess him and then diagnose him.

I don't get this fascination with calling an invisible disability a label. Nobody says they don't want to label their diabetic or child with Downs Syndrome. It makes it appear that autism is something and nothing or something to be ashamed of.

Nah, don't label him. It'll be so much more fun for him being the weird one that's increasingly out of step with his peer group with no explanation.

My eldest is academically highly able but cannot cross a road by themselves or organise themselves in the classroom.

And, yes, if they are autistic, I'll be surprised that by 10 years of age, they don't already feel like the weird one.

It's likely to knock their self esteem. Better to know who you are and why.

@DisquietintheRanks I’m trying to do what’s best for him. I appreciate your point but you could possibly be a little more sensitive? Realistically would a diagnosis mean that he wasn’t the weird one out of step with his peers? Totally appreciate your point that it could help him though (which is why I asked others with perhaps experience, what they think).

It’s not a label, it’s a diagnosis. My 16 yr old ASD son is very affectionate, adores both grandmothers and visits both at least once/twice a week and does little jobs for both. He’s very good at English in school but not so good at maths.
You say your child gets anxious being late, I do not have asd but would be extremely anxious if I would be any way late, I need to be at least 10 minutes early to stay calm.
It wouldn’t do any harm to get a referral for an assessment, if it turns out they do have ASD it will help them understand themselves better

@DiddlySquat52 Great point about the “label” and you are absolutely right. Thank you.

My DD has high functioning ASD (2 degrees and a great career) Having a diagnosis has helped her a lot. She used to stress about why she was stressed and struggled with relationships and trying to fit in. Now she realises its OK to be herself and she builds quiet time into everyday.

PDA is a feature of my DDs ASD, she is super organised at work (and wisely has a job that makes the most of this) but if someone springs a surprise on her socially, it really throws her out of kilter.
If I ask her to do something for her that she perceives as "putting on her" then she becomes very stressed and threatened.

That’s interesting. I know very little about ASD but the lack of outward affection thing is something I heard over and over.

Well done for being on this though and for spotting it.

There's no harm in getting a referral to be assessed. If he's not autistic, he won't be diagnosed.

Also, the waiting list for assessment is around two years where I am and many autistics crumble when they get to secondary age. Better to start following it up now.

I think they also recently changed the criteria so that school ha e to see signs too which is all kinds of wrong. School's don't like to accept a diagnosis because it costs them. Plus they're not qualified to spot the very subtle signs of autism. It's a disgrace and I think it's done to stem the flow of the number of people being diagnosed.

My children's primary refused to accept they were autistic even after diagnosis by the NHS. They did everything they could to stop them getting EHCPs. It's all about the money...

Several years later, it's costing the LA 2-3 times what it would have cost them had my children been supported properly when they were 6-7 years younger. They wait for them to break until they're forced to support them. It costs more money in the long run. About 80K a year now instead of maybe £20-40k had they been supported in mainstream.

This is really interesting. My son definitely gets stressed if criticised and he’s also easily overwhelmed. Thanks for sharing your experience.

I'm not sure how helpful I'm going to be as my situation is different to yours. I have a 5 year old who was diagnosed autistic aged 4. I fought to get him diagnosed early. He has a very spiky profile, but socially wouldn't be able to cope in mainstream atm so is at a special school.

From a practical point of view, my advice would to get him referred to whichever service/team conducts the autism assessments in your area. One thing you can be sure of is that it will be a VERY long waiting list, and even once you get to the top of it, a very long and drawn out assessment process (particularly if it's not clear cut, which sounds like will be the case for your son). I'm talking years from the point of referral to diagnosis tbh. So... you might as well get the ball rolling.

From an emotional/mental health point of view- my opinion is that a diagnosis is really helpful for the individual. I say this based on what numerous autistic adults themselves have said. I think it helps with identity and understanding who they are and why they struggle with certain things (whilst being amazing at others!). It might also mean they can access certain social groups specifically aimed at autistic teens for e.g.

The other thing is that although he seems to be doing ok now, this may not always be the case. He might start struggling and require more support (either at home or school), and it will be so much easier to access support if you already have the diagnosis in place.

Out of interest, have you spoken to your son about it? Does he think he's autistic? You'd be surprised how insightful young people are about these things these days!

Good luck with whatever you decide to do :-)

Waiting lists are extremely long, so I'd go see your GP and kick off the referral now. Also speak with the SENco at your school, and at the secondary he'll be going to, to help with transition. Some autistic children (mine included) coped fine at primary and masked well, so you'd think they were just quiet and a bit quirky. But the huge change to a secondary environment is challenging for autistic children and you want the support sooner rather than later.

You'll get told by school that a diagnosis isn't necessary, it's needs based. But my experience is that the support is limited without a diagnosis, because that opens up funding.

Disgusting isn't it? It's not an educational diagnosis! It's a developmental one. So why schools have become the gatekeeper is anyone's guess. Oh yes... stemming the flow- spot on. Resources and money is all it ever comes down to

The waiting times for assessments are such a long wait these days it would be worth getting the referral completed by the GP as you could be waiting years if you are looking at an NHS assessment.

I have a child with autism and attend some groups specifically for children with autism and their families.

There are quite a lot of the teenagers there that flew under the radar at primary school and then really struggled at secondary.

For someone who doesn’t really like change high school is a massive unsettling change.

One of the boys from one of the groups we go to told me not only was it stressful to go from one classroom and one teacher and one set of students to constant change from lesson to lesson.
But in addition to this students have to get into lesson find their seat, get the right book out and correct equipment out and then less than an hour later in some cases put it all away again to do that again in the next lesson that they have to get to.

The crowds of people during lesson change seem to be a big trigger as well as cooking lessons if a child is very sensory about food textures and smells.

If your son does go on to get an autism diagnosis then if he did struggle at high school he is legally entitled to the school making reasonable adjustments for him under the disability act.

He may be absolutely fine at high school however if he does struggle you don’t want to be starting the long wait for an assessment at crisis point

Pot. Kettle. Are there any other disabilities you don't think warrant a "label" and the recognition and understanding that go with that? If he was blind, for instance? You'd just leaving him stumbling round wondering why other people don't constantly trip over stuff or get hit by cars when crossing the road?

If your son is autistic he is disabled and he will struggle with many aspects of everyday life. That struggle will happen whether you acknowledge it or not.

Lifethrouhlenses Things that have helped the most with my DD are noise cancelling headphones, a weighted blanket and not over explaining anything. The concept of Hygge was made for her! Lots of little sensory comforts.
She can present to 400 delegates without a second thought but stands outside shops hopping from foot to foot because she can't cope with the sensory overload.
I would encourage you to fight for the diagnosis. There's nothing to lose, if he hasn't got autism he won't be diagnosed with it.

@DisquietintheRanks Gosh you really are being quite mean. I came on here to ask other people what they think because I want to do what’s best for him. I’m not refusing to acknowledge it - I’m asking about it on a public forum! Neurodiversity isn’t a disability (in my mind anyway). I am naive about it all so that’s why I’m asking and you’ve said it yourself, he may struggle regardless which is why I’m working to understand the pros and cons of a diagnosis. Luckily I’ve had lots of constructive comments about why it’s helpful which I will take on board. Why wouldn’t you be kind to a Mum who is worried about her child? Just odd.

In law, neurodiversity is a disability.

I think you might need to join a parent support group and do some courses to learn about the condition. Some of the things you are saying are quite offensive to autistic people. I don't think that you're meaning to be but you do perhaps need to learn more about it to understand things better.

When I suspected my daughter at age 7, I researched it and had a lightbulb moment and suspected myself of being autistic. I've since been diagnosed with autism and inattentive ADHD. I feel so much better in myself knowing that. I have spent years wondering why I don't feel like I fit in with society and wondering why other people seem to make friends so easily. It meant that I could forgive myself and not be so hard on myself for all the difficulties I've had at school and work. It's helped my sense of self worth. Plus I make adjustments for myself and don't take in things that I know I can't manage. I've accepted myself.

Sounds a lot like my DD at Primary, I passed any quirkiness and social issues off as being an only child but started saving just incase knowing that if it was ASD it was likely to show up when she moved to Secondary school and NHS waiting list is 4+ years if you even get on the list.

And those signs showed up with a large bang by the Christmas break in year 7. The SENCO was on maternity so I didn't have much luck with the school until year 8. She started having panic attacks and all sorts that she never had before, an annoyance of loud noises become completely intolerable and now she will physically flinch at loud noises and NC headphones are required to give her any quality of life.
DD is extremely compliant, very worried about getting things wrong, the idea of being late causes real distress. This is great as a parent but the idea of her falling in with the wrong friend group and being compliant to them was scary, thankfully her friends are lovely.
She is extremely academically able, turns out she's Mensa level in several areas that they tested but only 'high average' in others giving her the stereotypical spiky profile of a child with ASD, it also means her ability has been covering her disability.
DD internalises her distress and has shutdowns rather than meltdown. She flits between intense interests. And does not have rigid routines but does need to maintain sameness and needs warning if plans change.
School have been supportive but didn't recognize any of what I reported seeing at home because DD masks and puts on a front. DD loves lessons and the content but struggles massively with the busy school environment.

I was thankful I saved up and meant I could afford the £2.5k and it was only a 6 week wait. The diagnosis has been worth it's wait in gold, when DD feels overwhelmed she understand why, we've been able to put practical supports in place to make life easier for her and taught her how to advocate for herself.

*weight in gold

Thanks @Singleandproud that’s really interesting. Your daughter sounds very lucky to have you to advocate for her. I can tell how helpful it was to have the diagnosis.

@DiddlySquat52 the only thing I can possibly think that I’ve said to be offensive is calling having a confirmed autism diagnosis a label. I didn’t mean to cause any offence by that at all and I apologise if I did. I’m new to this and my language was clumsy.

I don’t consider neurodiversity to be a disability because I work with a lot of neurodiverse people (around a third of my team). They are brilliant and talented people who think in a different way and without them, the team would be very diminished. Of course they all have different challenges, as do others in my team in different ways. I’ve had many conversations with the colleague I am closest to and she would be deeply offended by anyone calling her brain disabled but of course everyone has different thoughts and feelings. But I stand corrected about it being a disability in law if that is the case (I thought it could be classed as a disability in some circumstances but isn’t automatically).

@Lifethroughlenses your child is going to change massively over the next few years. He may cope better, he may find things more challenging.

I first raised concerns at about 18 months with DD2. I was brushed off consistently. She went through 3 schools and a period of home education because she struggled. Finally diagnosed at 11, after school 3 saw the problem in year 5 (age 9), when they changed her class.

DD2 'coped' with secondary school all the way up to Christmas of year 10. She struggled, but she coped. Then all her coping was used up and she fell apart. She spent from January to March on an increasingly reduced timetable, then the teacher told me to stop trying to bring her to school because everyone could see how much it was damaging her. She was out of school completely from March to May, then offered a place in a PRU, in their 'vulnerable students' sexton in June of year 10.

We are lucky. I knew enough and had enough guidance to apply for an EHCP, insist on a speech and language assessment and occupational therapy sensory assessment. I also knew enough to challenge the SALT assessment when it summarised that DD1 was 'average' (She had some scores on the 0.4th percentile and others on the 98th percentile, so the SALT had added them together and divided by 2).

DD2 was given a place at a small independent specialist school (35 pupils, 3 in her class). She was also put back a year.

This is a child who had nothing but her name on a SEN list until year 10. It can go very wrong, very fast, and if your child isn't even diagnosed at that point, you'll have 2 years of CAMHS waiting lists to sit on.