To think my ds might be autistic

[Lotus376]

My ds6 is showing some behaviours that are concerning me. My dp and I have thought for a while that he is possibly on the spectrum but when I have tentatively broached the subject with his teachers it's be largely dismissed.

School is very much a safe space for him, he loves routine and thrives on the predictability of it. However at home things are very different, and if we ever do something that is different from every other day he really struggles. We're trying to decide whether to push for an assessment, but I worry that we won't even get as far as a referral since his behaviour is so different in school. Some of the things that are ringing alarm bells for us are:

He is very particular about the feel of clothing. Sometimes it can take me 20 mins to get his socks on in the morning as they don't "feel right" which makes him very distressed. Shoe shopping for school is a nightmare as he hates the feel of most shoes, with each pair that doesn't feel right he gets more and more upset, usually culminating with him screaming on the floor.

He's also very sensitive to smells and noises. He gets very upset if things get too loud or if he smells something he doesn't like, particularly sausages. He came home crying the other day because he was sat next to a child eating cocktail sausages at lunch, he didn't eat his lunch because the smell "made his tummy flip"

Any changes to his routine causes him a lot of anxiety. Non-uniform days, school trips all induce meltdowns in him the night before. He won't ever show this in school though because it's very important for him to be "a good boy".

Parties are really tough for him. He wants to go to each one he's invited to, however we usually have to leave with him very distressed as he can't handle how unpredictable they are. If there's loud music playing we have to leave straight away.

He gets obsessed with a particular topic and it's all he can think about. The latest obsession is Michael Schumacher. It's all he will talk about at the moment, any question he asks me will be related to this topic. If we're having a conversation he will find a way to bring it back to his obsession.

It's so upsetting to see him regularly becoming distraught with everyday things that most children can handle. I have a younger child and things just seem so much easier for her, she takes everything in her stride and rarely become inconsolable like my son. The reason we're considering asking for him to be assessed is that we don't know how to help him. We want him to be able to cope with life and all its unpredictability. But since he is so controlled in school I worry we'll get nowhere! Does anyone have any advice?

He sounds very similar to my daughter who has recently been diagnosed with autism. We have exactly the same with socks and shoes. The masking in school didn't affect the assessment - the report from school said that they had no issues, but it was quite apparent to them elsewhere in the assessment, so school report didn't matter. I self-referred for the assessment, which you can do in my area.

School reassured me for years that DS was doing fine, though I had concerns about how he was doing socially. Everything fell apart for DS early last year, at home at first, at which point I contacted the school, met with his teacher then had a meeting with the ALNCO, told them everything about his behaviours and they put the referral in.

We got the diagnosis a couple of months ago - DS ended up being bumped up the list after a lot of work by the school, due to how bad things got, and because the aim is to get him into a special unit for secondary, but he needed a diagnosis for that.

Different schools are different I know, but ours was incredibly helpful once they had the full picture.

As a parent to an Autistic child I would always say go for a diagnosis. It’s important that an individual knows why they think and feel the way that they do otherwise it can lead to mental health problems later in life.

I also think it sounds worthy of pursuit. In the meantime, read up and get knowledgeable about autism. There really isn't that much support on the other side of the diagnosis. Spend the time researching and learning now and put strategies into place to support your son while you're waiting.

We home educated for several years and I think this helped me see the struggles more, but because she was intelligent I think it would have been completely missed in a school setting.

Yes, I credit the first covid lockdown entirely for DD getting her Dx comparatively early (compared to most bright & masking autistic girls). I'd had some suspicions before that something wasn't quite right and I'd struggled to categorise, but sitting next to her at the kitchen table doing school work for weeks on end made her difficulties really apparent. I was able to approach school once back in the September with a long list of observed behaviours and discrepancies. Once they started to observe her in class specifically for the things I'd listed, the scales fell from their eyes. They even spotted some other things I hadn't noticed.

Similar situation to you. Eldest I think is asd and masks. I've spoken to thr school who see no issues. I do at home though amd it's the sensors stuff food clothes not getting washed tooth brusing etc. He's meant to be doing his 11+ next year but I'm not sure he will manage the stress involved in this. Currently on a private waot list which is still 9 months away

Thank you for all of your replies, they've all been extremely helpful. We do already have things in place at home to try and help him. If we are visiting somewhere new for example we prep him, show him pictures, role play etc. It helps sometimes but he can still become overwhelmed. I hadn't heard of seamless socks, kicking myself for not thinking of that. I will definitely be getting some though!

One of my concerns is that his ability to mask in school won't last forever, and to hear some of you saying that it becomes more difficult the older they get has reinforced that. I will be contacting the SENCO at his school to discuss things further and hopefully they will support an assessment. If not I will go to our GP.

To answer a few of your questions. He was a very late talker and had speech therapy aged 3-4. He was never able to follow a point, in fact he still can't now. If he's trying to find something I have to walk him up to the object, if I point he will have no idea where to look.

Also just to be clear, I don't want to cure or change my son. We love him for exactly who he is and wouldn't have him any other way. I just want to make sure that he has the best possible chance of accessing all of life and to hopefully alleviate some of his anxiety.

He clearly has sensory processing issues at the very least. Often part of Autism, but can also be stand-alone. It's concerning that the school doesn't understand the concept of masking and that he might be coping better at school and then worse at home. Definitely talk to them and start pushing for assessment.

I 100% second seamless socks - we buy cheap bamboo seamless socks from TheSockShop. They have been life changing. And often, we eventually realised, the issue with the shoes was ACTUALLY about the sock. Buying new shoes was also transformed by getting seamless socks!

If he wants to go to parties but finds the noise hectic, look at noise cancelling headphones/ear defenders. You can actually get some that just look like AirPods - so much less visible and intrusive. they're not as good as the full sized ones, but compared to what he's experiencing at the moment, might be life changing. DS doesn't use his much but he found just having them reassuring - he was desperate to go to a live football match but was really nervous about the noise. DH said that he only wore them for about 10 minutes, but it was knowing they were there that made all the difference.

I think it would be well worth looking to get the ball rolling on diagnosis. My son was diagnosed earlier this year and we went private as had reached almost breaking point at home and couldn’t face to 2-3 yr waiting list.

Oooh I second the bamboo socks from sock shop. They’re always a great price and come in lots of colours

Same here. My daughter is now 18 and has recently been diagnosed.

She actually had an assessment at school when she was around 7 where they agreed she had some traits, it wasn’t enough for a diagnosis.

We kind of muddled through with various support put in place at school, until she had a breakdown at the start of lockdown, got referred to CAMHS who were stunned she hadn't been diagnosed before.

Diagnosis has helped get her the right support - she’s now in college and they wouldn’t really do anything without an EHCP and a diagnosis (she has other disabilities too)

I'm in a very similar situation with my 6 yr old DS. He is 4th of my 5 children, without the experience of parenting the NT older 3 I'm not sure whether his behaviours would have been so apparent.

Well, I say it wouldn't have been apparent but one of the glaringly obvious things with DS is that he has an American accent, had it since he could talk. He too was late with speech and we were referred to Speech and Language Therapy. Now he is considered pretty articulate, but he uses quite adult phrasing, if that makes sense?

Same as your son he thrives at school, the routine and rules suit him down to the ground. He loves to be considered "good" and will follow instructions to the letter. I honestly can say he never displays naughty or unruly behaviour, he doesn't do something just for devilment. His teachers have no concerns or complaint about his behaviour.

However, some of his behaviours at home include; if something doesn't work out how he thinks it should he is prone to outbursts of screaming and either hitting himself in the face, grinding his teeth audibly or hitting his head off a surface. He's never had a meltdown at school. He's sensitive with noise. He has issues with food and drink, very limited range, wouldn't try something new and if I changed a recipe he would refuse it. Has the same school meal each day (jacket potato with beans). Not interested in seeking play dates or making friends but will play happily amongst others. Has intense interests, moves from one to another and that'll be all he focuses on. Whilst pretty in keeping with age (dinosaurs, sea animals, Lego) he can go into incredible detail and would talk for hours on the subject.

The schools viewpoint is that they see some behaviours that are consistent with ASD but not enough to warrant action from them. They want to monitor him further now he has moved into year 1. The GP was a little dismissive, wanted a report from the school before proceeding and did go on to say that they felt there was little benefit in "labelling" children. They referred us to the Triple p parenting program which runs a course on parenting children with asd, adhd etc

I feel a little in limbo at the moment. Sometimes I feel his behaviours aren't that bad and we cope just fine, but on the other hand I don't want to be at a point where we do need help and can't access it because we don't have a formal diagnosis. I think we cope well because we've made adaptations organically, as and when issues have presented.
A friend of mine's daughter has recently been diagnosed at age 14, she said it's only as she got older she struggled so much more, wished they'd pursued a diagnosis years before. I don't want to put my son in the same situation.

@LucieLemon my advice to you is the same as to the OP - don't wait til the wheels are falling off to seek a diagnosis. It's
very bad for their mental health to get to crisis point. Not great for yours either.

Thanks, I think I might go back to the GP but be a bit more structured about why we're there and in outlining the behaviours.

That's exactly my concern. It feels like over the last 6 months things have escalated at home, more meltdowns and it's harder for him to regulate himself afterwards. I don't want to wait until it spills over in to school before we seek a diagnosis. He gets really embarrassed by his meltdowns when they're infront of other children, it happening in school would be very distressing for him.

I found, across the board, I was listened to most by having the (long!) list of traits prewritten and ready to reel off, accompanied with several recent examples alongside each trait and what we had tried, without success, to remedy it. If you have already been on any courses to help particular aspects (eg sleep or anxiety workshops), it's good to mention those too to demonstrate DC really is behaving outside the expected norm despite your best efforts.