Teacher wants my son assessed for ASD

[unlimiteddilutingjuice]

So my son's teacher has suggested I get him assessed for ASD.
I've started the ball rolling with the GP. She wants to have a chat with him next week and make a referral to CAMS. I understand we can expect a proper assessment in about a years time.
The behaviour the teacher is worried about is: chewing things, needing a lot of sensory input (hugging her, trying to climb on her), figiting in class, difficulty staying on task and processing tasks with stages (eg: trouble getting dressed for PE) and a tendency to be in his own world rather than picking up what the other children are doing. Recently he accidentally went to wait for the school bus at lunch time rather than follow the other kids to the cafeteria.
He's 6.
At home, I've not really noticed any difficulties beyond him being a bit quirky but I can see that something is stopping him from getting the most out of school.
Can anyone say whether this sounds like ASD to them and explain what's likely to happen at the assessment?

Some of the things you describe sound like a sensory processing disorder. There's a book called 'the out of synch child' which might be worth reading. It gives descriptions of how the senses work and what behaviours you might see in your child. It then has a tick box list at the end of each chapter so that you check if you think your child might need to be assessed by an OT.

The assessment process varies depending on where you are and how verbal/old your child is. It should be multidisciplinary though (views from you, the school, paediatrician, EP and SALT if appropriate) and will probably include an ADOS assessment.

Thanks Livpotter I'll check that book out.

I would just add, you don't need to wait for a diagnosis to put things in place that might help him. A visual timetable, explicit instructions broken down into steps, sensory items can all be tried while you are waiting for diagnosis / OT assesment. Help at school should be given based on need, not diagnosis. The fact you have a teacher who has this in mind is a big positive. It might be worth booking in a meeting between you, his current teacher and his teacher next year, once you know who that is, to talk about ways to support him next year.

Difficult for anyone to comment on individual traits. My child definitely finds it harder to "go with the flow" and pick up on next steps from his classmates. He seems to lack common sense because he has not internalised norms that the rest of us do automatically. We normally find him fully dressed in school uniform on bank holiday Mondays for example, and if asked to draw the curtains he finds it difficult to work out if that means open or close them. However, equally there are other children who were quite vague at 6 (mostly summer borns, anecdotally) and they are not autistic.

I would also take a step back and look at what you have got used to as just being “quirks” simply because IF there is something you don’t want or being missed just because your so used to something (if that makes sense)

Thanks for your responses Attache and Sirzy

His teacher recommended we get him a sensory chew and I managed to find a really cool one in the shape of a shark tooth.
It arrived yesterday and he loves it. I notice he'll just put it in his mouth and have an absent minded suck when he's thinking about something or watching TV.

He has the steps process for leaving the classroom (put away work, shoes then coat) stuck to his desk at school. I could put something similar in his bedroom I guess.

Thinking about his "quirks"....

He has a really great imagination, comes up with really interesting ideas and loves pretend play. He can be empathetic and show interest in other peoples feelings and motivations.

But....he's also unusually self contained. He doesn't seem to need other peoples company a lot of the time. At school he has one good friend at a time. It can be difficult if the friend moves table or prefers to play with someone else.

His best friendships outside of school are facilitated by me- so generally the kids of my friends.

He goes to a youth club with a lot of kids he was at nursery with and doesn't really interact with them- despite an unbroken acquaintance of 4 years.
The youth club take photos for facebook and you can see other kids making faces and posing for the camera in groups- then photo's of DS just walking about on his own, hiding in his jumper or closely examining a table tennis bat.

I asked him how he goes about making friends and he said that he just plays by himself and if people are interested they ask to join in! Weirdly, I have seen this work for him as kids tend to be interested in his aloofness.

I've also watched him skirt a group of kids for about an hour, playing by himself at a distance and gradually moving closer before feeling comfortable to join in.

He doesn't seem at all distressed to be "left out" btw. He's very at home with his own company and a bit oblivious on playground politics.

He also hates change. For example- he has some babyish posters on his wall which he won't let me change.

He's also odd about new foods, particularly if they don't have a smooth texture.

My daughter has a Dx (she is 5 and was diagnosed about a year ago) and it was hard for me to get my head around but I think it's because we all come from a place of such limited understanding about what autism is.

E.g. there is an idea that autistic people aren't creative or imaginative. I think this comes from the fact that one of the diagnostic criteria is problems with social imagination - but that is about e.g. realising that everybody else is going to the cafeteria so probably I'm on the wrong track when I'm on my way to the bus stop. It's not about imagination in the traditional sense. My DD also is very creative coming up with ideas to play, and now that she will let people in other kids often come over and want to join in (including sometimes even year 1s and year 2s, even though she's in Reception).

There is also a misperception that autistic people are unfeeling or unempathetic. But this isn't right either. It's worth Googling Damian Milton and the "double empathy" concept. It's more about autistic people sometimes struggling to identify their emotions and know what to do with them (so they can be so overwhelmed they don't know how to respond "appropriately" rather than that they are unfeeling or don't care about other people - often they care very much). This is actually a trait I identify with myself - e.g. if two people I love are having an argument I find it completely overwhelming/stressful and that can come out as a giggle or something totally inappropriate and although I can often stifle it now I'm older, I always worried about it until I started to learn about autistic traits.

Struggling with change is another common one. With DD she might accept something like a picture on the wall changing if it was very flagged in advance and we spent a lot of time thinking about and planning what she was going to have there instead. I remember my Mum saying when I was little she always had to buy my clothes in advance of the season and hang them in the wardrobe so I could get used to the look/feel of them well in advance of actually having to wear them.

As others have said, whether he is or isn't autistic some of the parenting techniques recommended for autism (flagging changes well in advance, visual timetables, talking about and understanding feelings, etc.) could be really useful. Sounds like he has a very good and perceptive teacher and open-minded parents so that is a very good base!

You don't say how you feel about this. I found the whole idea very upsetting to begin with as I came from such a lack of understanding. I found watching autistic adults like Sarah Hendrickx, Purple Ella, Connor Ward, The Aspie World etc. on YouTube very helpful to improve my understanding, and following autistic people and academics working in autism (like Damian Milton, Luke Beardon, Felicity Sedgewick) on Twitter gives useful insights too.

Your DS sounds exactly like my DS who is 9 and has ASD. We only realised he had ASD when he started school and didn’t fit in the way the others did. He was diagnosed at age 5. In hindsight there was a few signs he had autism before he started school but we never really noticed them as they weren’t significant.

He has improved a lot over the years thanks to the understanding he got from the diagnosis and some adjustments that have been made for him at school - like he gets movement breaks and has a visial timetable.

I think this explanation of autism is excellent
themighty.com/2016/05/rebecca-burgess-comic-redesigns-the-autism-spectrum/

you are lucky school is interested as that will help.

read about asd in children and make a list of things that you think are quirky. you will be used to them but they are important to identify as part of the assessment process. You need to put all the information there for the assessor(s) I felt that if it was yes or no, it did not matter as long as they had got a fair picture of dd. She ws clearly autistic in the assessment.

(we only had one, school denied anything but filled enough hints in for the assessor to pick up, dd also displayed beautifully in the assessment, whereas she can often mask)

Thanks LightTripper and SuperSleepyBaby

I read the both your links. They were helpful. The thing about "double empathy" in particular makes a lot of sense.

Also good to hear that autistic people can be social, imaginative and empathetic.

LightTripper: I do that with clothes! If I buy a new thing I have to keep it about for a few months to get used to owning it before I can put it on. Familier things are like old friends. Didn't Russell Brand once do a skit about walking down the street in new boots and feeling self conscious as if the boots were saying "we're not his real boots.. his real ones are there in his bag"

How do I feel? I feel a bit ambivelant about it. As I said, he doesn't seem particularly impaired at home or among friends. It wouldn't have occurred to me to seek a diagnosis if the school hadn't suggested it.

On the other hand, I can see he's not doing well at school.
When I go to school events it's noticible that he behaves differently to the other kids and that it's difficult for him to fit in with what's expected.
Just before Christmas we had a terrible parents evening and it turned out he was badly behind in all areas.
I got him caught up with all his phonics over the 2 week holiday with just 10 mins work a day.
When he returned he got moved up to the middle table and was reading within days.

So that seems a bit odd to me. That it could be so easy to teach him one to one and yet he's sinking in the classroom.

If we can get a diagnosis it might help him get some adjustments if his difficulties persist.

My son was also struggling with his school work at age 5 and 6. Like you, I did some work with him at home on phonics etc and it made a significant difference. Now, because of the adjustments made for him in school, he is coping very well with his work in the class and I don’t have to help him at home. Because he is given movement breaks etc - he is able to concentrate much better while he is in the class.

That's fantastic SuperSleepyBaby
If DS could actually learn stuff at school, a diagnosis would be completely worth it.
I might ask his teacher about movement breaks.
He's got a wobble thing on his chair and he's allowed to have blue tack to figit with but I think he's expected to stay in his seat at present.

read about asd in children and make a list of things that you think are quirky. you will be used to them but they are important to identify as part of the assessment process. You need to put all the information there for the assessor(s)

BkackeyedGruesome Will I have to explain this to the assessor in front of DS?
My biggest fear is that the assessment process will make him feel bad about himself.
I definately don't want it to come across as though I don't accept him or I think there's something "wrong" about how he is.

I love that boots thing! Thinking about it I do tend to do that too. It's amazing how many "autistic" traits you can spot in yourself and all around you once you're tuned in to it.

In terms of having to discuss things in front of your DS, we were lucky that DD was generally younger while we were going through assessment and was often so absorbed in play she was tuned out of what we were saying. Some assessors will be sensitive but from what I've read not all are, so you may need to be prepared to offer to send something in writing or ask to discuss some of it in private (as your DS is older, I imagine he'd tolerate playing with one assessor in one room while you were talking in another room, at least for part of the assessment, so they'll probably arrange it that way). At the same time, I think a lot can be discussed in a non-negative way: we all struggle with some things and find other things easy, and there are a lot of traits you can describe without any judgement. So you may find it's OK, but hopefully they'll give you then chance to talk in private in any case. If there is an initial GP appointment I'd go by yourself unless they tell you that you need to bring him (and if you need to bring him then I'd bring everything you need to say in writing).

At our final assessment (when DD was nearly 4, so more aware) I brought a list of all the things I'd noticed about her development printed out and handed it over. The assessor said afterwards that it was useful (it included e.g. lots of imaginary play/activities that she hadn't seen in her classroom visit), and it allowed me to share things without having to discuss DD in front of DD (which now she is 5 I know she absolutely would not tolerate, but even at nearly 4 she was starting to tune into that kind of stuff).

Most of our interviews were done without DS there at all - he was observed separately. I think that is not always the case, but the CAMHS team were really excellent at phrasing things in ways we could answer. There was talk of neuro-diversity rather than the word "autism" around DS and even when it was just us, they referred to ASC not ASD.

We did have an initial assessment with DS there. I phrased it all in terms of worries DS has - he had identified 3 aspects that worried him, such as feeling too stressed. We said he finds it hard to understand when X, he gets very stressed and anxious when Y. The fact it's causing him difficulties is what turns "quirkiness" into diagnosable autism.

I left DS out of the room while I discussed him with the psychologist. Then she had a chat with him and played a game with toys to see how he interacted. She did a good few tests then - which seemed to be checking his knowledge of the world and different scenarios.

Because DS was only 5 I told him the woman was just checking everything was ok with him for school and that she has to check all the children. He was fine with this.

Once he was diagnosed we told him straight away that he had autism. Its been very helpful for him to understand himself - he knows there are benefits to having it (like his great imagination and ability to focus so much on things he loves) but there are also challenges that come with it -( like his motor skills are not as good as others so that’s why he can’t play football as well as them). For him, having autism is no big deal - its just a part of him.

The advantage of knowing he has autism is that he can explain to people that he needs some adjustments in certain situations and that makes life easier for everyone.

Also, the assessment identified areas he struggles with like motor skills, social skills and sensory issues and made suggestions for improving these. At school he is taken out of the class for 30 minutes every day to work on these and has made great improvements.

I also just wanted to recomemd tbis book to you - as your son sounds quite like mine - and it really helped me to undeestand my son. It is written by someone with a diagnosis of aspergers.
www.amazon.co.uk/Martian-Playground-Understanding-Schoolchild-Aspergers/dp/1849200009/ref=mp_s_a_1_1?hvlocphy=1007850&hvnetw=g&keywords=martian+in+the+playground&hvadid=259133508697&qid=1559126366&gclid=EAIaIQobChMItMGapcbA4gIVT7vtCh1bDgQcEAAYASAAEgIzLfD_BwE&s=gateway&hydadcr=13691_1820769&hvpos=1t1&hvdev=m&hvqmt=e&tag=mumsnetforu03-21&hvtargid=kwd-301660941015&adgrpid=55990093409&hvrand=1865467151397620702&sr=8-1

Thanks SuperSleepyBaby That book looks great. I'll have a look.

Can i suggest you ask the school to get an OT in to observe and outline measures to support his sensory stuff. The OT has been the most helpful person we had for DS who has autism with lots of sensory issues. They will resist but waits will be long so try and get a referral asap.

SuperSleepyBaby
I read that book. It was Ace! Absolutely recognised DS in the first 2 pages!
Thankfully he's not experienced any of the horrible bullying and isolation described. ( for those poor kids).
The pattern of highly focused attention on his interests (Dinosaurs) versus total lack of attention on anything else is definately him!
Well done DS's teacher for spotting it.

Grasspidgeons I think the teacher is trying to circumvent that process by getting me to ask for a referral through my GP.
The way she described it, the school get to put names forward to a board every few months and the board discusses the cases and prioritises sending OTs out to the most severely effected each time.
DS's school problems are thankfully quite mild so he'll never reach the top of the list.
I really don't know how the system works but she seemed pretty confident that the GP route was quicker.