ASD assessment Qs

[Whatcouldpossiblygowrong]

Hi.
I have a 7 y old son who for most of the time during normal routine school and home life you’d describe as bright, bit quirky (eg very into fossils crystals bird watching etc), very sensitive (can have tantrum or overreact) and quite intense (talks fast, coming up with ideas or asking deep questions) . Many of these are both assets and challenges I’ve put down to him having a very fast and brilliant mind.
There are a couple of physical glitchy things (v sensitive to pain, sensations in body or on him eg hates tickling and blankets, constantly telling us of tummy ache and headache etc) sensitive senses, tired v easily, cannot function v well at all if remotely hungry.
School reports are always exemplary and staff say he’s thriving. He himself reports classroom as fine but playground as overwhelming unless he has his bestie there. We’ve been in to discuss our concerns about emotional regulation / social development stuff at home but school are happy there’s no issues in school and we’ve assumed he’s just overtired at home
However - out of term time we really get a ramp up of things including constant counting/ thinking and talking about patterns, climbing on us or pulling on our arms etc (attention seeking) anxiety around what is happening next, fixating on an event or object, being cynical, controlling, seeming rude or doing opposite of what’s asked etc etc it is much worse if we go away - eg weekend away or holiday.
We go through this cycle over and over where we go back to school and say how hard it’s been and basically beg them for ideas- then he’s a bit easier in the term .
I’ve thought about gp but feel we will be dismissed from camhs due to good presentation at school (we are both teachers so know the lengthy process). Also thought about private assessment (which would at least provide quicker answers rather than waiting for it to become a problem at school) but not sure how much it would cost/ where is reputable / if school or nhs or council then take that as valid diagnosis (if diagnosed).
Of course could leave it to develop and see if these things get more pronounced at school or get better at home.
Our intentions are to understand his behaviour and way of thinking , reduce frustration (ours and his) and work with him to develop before “big big school” best we can.
All advice or experiences welcome- feel lost!!!! This week I’ve gone from crying my eyes out about his behaviour (when it was at its worst) to accepting him for who he is and reading about space to him and being grateful for my lovely bright boy

It’s really difficult to decide what level of issues merit an assessment. We were in your position a few years ago. I read up a lot about ASD, talked to school and considered a private assessment. At that time the feedback I was getting from school was that although there were admittedly some low level issues, they really didn’t think DS had ASD, or needed a referral. They did put some support in place in school. I was fairly happy with this (good, small local school), and felt that I could manage any issues myself at home. I don’t think a diagnosis would have atttacted any additional support at this age.

As DS became older, we felt his issues (particularly social and emotional regulation) became more significant. At about 8.6 some fairly major anxiety and sleep issues started. At 9 we asked school to refer to CAMHS, which they agreed to (although warned us that the referral was likely to be rejected or that at best we’d be on a waiting list for months).

DS is now being assessed by CAHMS under the ASD pathway - the referral was accepted, and it took less than 2 months to get an initial appointment. We’re probably looking at an observation, meetings with us, school and DS and ADOS (if things proceed that far) all before Christmas - so really not that bad.

I think “wait and see” is a reasonable approach if you feel that you can cope. We pushed for a referral when I started to feel that I couldn’t cope, that it was increasingly impossible to juggle DS’s needs with those of his siblings without at least having an explanation, and when we felt that (especially approaching secondary school), a formal diagnosis would help DS’s issues to be taken into account. He’d gone from being very bright, quirky but happy to increasingly sad, anxious and struggling. I still don’t know if he’ll get a diagnosis - it’s far from clear cut - but the process feels positive. The really good part for me is that DS went to bed the happiest I’ve seen him in months after our first CAHMS appointment - he responded so well to someone taking the time to understand him, and suggesting that he might have a “thing” which would make him like other people - not just “different” from his peers.

Good luck - we really struggled with this for years so I know how hard it can be. Your lovely bright boy will remain just that whatever route you go down, for me it’s been about what will help DS to be happy and reach his potential.

I absolutely cannot thank you enough for your response. I’m in tears. It’s the first time I’ve ever felt someone knew how I felt.
I’m so moved. Wowsers- tears a flowing! 😭
We have been offered the money for the private route from a wealthy family member who wouldn’t be stretched to offer it . I can see it getting more pronounced in many ways - especially out his comfort zone- and would prefer (if he does get a diagnosis) to be able to act preventatively in terms of school support rather than wait until there’s a problem (if it got to that).
There are so many things that we just “manage” that are so exhausting and as you say- effect our marriage, our other son-the whole home. Also our son is often frustrated stressed angry and upset which has only crept in this year. I often compare his behaviour to his peers (I know I know - a hiding to nothing) and I think some of it is normal end of term tiredness, growth spurt, hormones, pushing boundaries- but at times I know in my heart it’s way beyond that. Thanks again for your advice. I’m going to keep thinking for the week and then decide- but I’m wondering if the private route might be the best option considering it would leave the camhs route an option for later should we need it(ie nothing is picked up now but we are still concerned in 2 yrs).

Great post by @JustSomebodyThatIUsedToKnow

However - out of term time we really get a ramp up of things

That's because at school, there's a structure, every day has a timetable and he knows what's happening and when.
Without that, he's totally lost, has no idea what's happening and it's anxiety central.

Let him structure his holiday time with you, you can veto anything that conflicts with other family interests, but sit together and try to arrange his days so he knows what's happening. He could draw picture cards if he wants to.

Use now and next terminology, especially if you have to alter the structure for him. Now, we will eat breakfast, next, we will go for a walk Halfway through the walk, prepare him for the next thing. Never assume he can pick up on hints or inferences, he has to have very plain, clear instructions. No "we might do" always we will do x then we will do y.

Once you've got the hang of that, start building in some flexibility, take it slowly, but there will be days where a walk doesn't follow breakfast, so prepare him in advance for that. Usually, we'll have breakfast then go for a walk, but the weather may be too bad or siblings may need to be elsewhere then, so what we'll do then is stay indoors and do X or see to the siblings, then the next thing will be back in his routine.

Yes that’s great advice
Most of the time- if he’s slept and not hungry or hot- he will accept changes in plan quite easily and seem to embrace new experiences- but other things- like frustration at me talking to other people and not giving him 100% attention-hanging off me- climbing on me- less tolerant of his brother- cynicism about everything so that nothing feels good enough or needing to question and explain everything in great detail ramp up- which makes me wonder if he’s feeling anxious / disorientated even if he doesn’t say it.

Anxiety is the key, ramp it down and he'll be much happier. Quite often kids can't tell their anxiety level is rising until it's overwhelming.

Finding what triggers his anxiety isn't the easiest task but we all learn to observe our kids and often in the early days only realise after the meltdown what actually started the whole thing. It takes time, observation and effort, but eventually you'll recognise his triggers and use any strategies you can to avoid them, then if they're not avoidable, put things into place to manage them.
Every child is different, have you considered a sensory OT assessment for him, the being heat sensitive, climbing on you and arm-pulling could suggest a sensory need.

See if there's anything here which sounds familiar. www.additudemag.com/screener-sensory-processing-disorder-symptoms-test-children/
Have you read up on Sensory Processing? The Out of Sync Child is a good one.

How's his executive function? www.additudemag.com/what-is-executive-function-disorder/

I've not used the links because I think your son may have ADD/ADHD, I've used them because they give a good enough explanation of SPD and exec function (and other conditions) so you may see issues and could mention that if you decide to go for an assessment.

In your shoes, I'd go for a comprehensive private assessment now and keep CAMHS on the back boiler in case you need their input later.
find out how long their waiting lists are, it can be years in some places so you may be as well applying to them not long after you receive his private diagnosis.

Thank you - that is really helpful.
I’d say there are bits and pieces in there- sensory wise he is not ‘fussy’ about textures of food, washing, clothing etc. But hates blankets and cushions touching him. Similarly with sensitive smell and hearing he does not seem to get upset or anxious about it just tells us what he can smell and hear a lot- more like extreme noticing.
He has excellent memory for detail short and long term- but can’t always emotionally regulate- especially if frustrated and it’s a classic that he’ll give up on a first attempt and say he’s dumb or pathetic even though we focus on his strengths and encourage practising.

Also he’s quite unco-ordinated in some areas- eg struggling with colouring , hand writing, tying shoe laces and swinging on the swing, whilst he can do buttons and use scissors with ease! Hard to know what’s ‘average’ for his age

A comprehensive assessment by a team sounds like a good idea, that should catch everything and produce a diagnosis. Ed Psych, OT, SLT and Paed are the usual NHS ones, see what's available in your area and see how much they charge.

Some Ed Psychs etc. work for the NHS one day per week, that means that their diagnoses should be accepted by a local authority without having to have a separate NHS dx, but I found it difficult to get that information in my area. Hopefully, yours may be more forthcoming.

Before the assessment, it helps if you can write an overview, much as you've written in your posts, then the diagnostic team have some idea of the areas you've observed him being different to his peers and will be able to test for anything you're concerned about. Most kids don't have just one diagnosis, there are lots of co-morbids like sensory processing etc. which can be identified at assessment.

You'll be happier to definitely know his strengths and weaknesses and to have suggested strategies for support.

Ok— after all the advice- and a mega mega hard bedtime(!) I’ve decided I’d like to do the private assessment .
Now a matter of where. I’ve heard of the Lorna Wing (NAS) but apparently they don’t use ADOS they use DISCO?! Anyone know the difference and whether the Lorna Wing one will be accepted by other practitioners?
There’s also a local place that offers the ADOS plus SALT and parent report but isn’t listed on the NAS directory. For so much money- how the heck do you know you’re off to a good place?! We don’t mind travelling if anyone has a recommendation

Hello. We have Ds 6 who was diagnosed privately with ASD, we also have a massive term time/holiday disparity although with him in term time he is angry explosive and anxious although impeccably behaved at school and in the holiday he is MUCH happier but also much more overtly autistic it's like he can finally relax and be who he is. He has a twin who is waiting for assessment who thrives on the structure of school and really struggles for a few weeks in the holidays with the loss of that structure gettimg much more anxious and tearful. So despite being identical twins in identical environments their ASD affects them very differently. We persued private diagnosis because they are academically high achieving and very well behaved at school so would never meet nhs referral criteria but we knew something wasn't right and didn't know what the hell to do or where to turn. It's helped us understand if nothing else. Good luck.

Thanks- glad you’ve had that experience and it does help tonknow- constantly doubting if we are doing right thing and if he’s just a normal kid who we are exhausted by?!!

We did not go the CAMHS route, instead went to GP and then paediatrician. She organised referrals to OT and SALT and assessed for ADHD and ASD. As ds1 was on border for ASD she used the 3Di assessment which showed that in some areas he scored high enough for a diagnosis but not in all. She therefore diagnosed atypical autism. I found the paediatrician invaluable at getting to information from everyone and tying it all together.

My ds1 was usually fine at school but occasionally he had a meltdown so this diagnosis helped them understand. He particularly struggled with trips and days off timetable (not surprisingly) but at least they were prepared.

He is actually finding secondary school much easier than primary. They were really on the ball and he loves the strict timetable and how every lesson is a discrete subject. He particularly likes the bells and knows precisely what time they all ring!

DS was diagnosed at 7 by our local nhs paediatrician plus SALT. They saved us from going the CAMHS route as we’d been through their services previously. Technically we should have gone to CAMHS once he was in school. I know lots of people who get stuck in limbo there with no diagnosis and a “wait and see” “it’s just anxiety” approach. I’m so glad we didn’t have that as we’d still be just thinking we were rubbish parents. As it is we know we’re not great but we’re doing an ok job with a difficult child!

Rather than languish with CAMHS for years I’d say go for the NAS route. I’d reckon it the least likely to be questioned by local services. Keep your CAMHS referral open and then see if you can get a letter out of them confirming that they agree.

Don’t wait if you are approaching secondary school. This transition is particularly tricky nd without diagnosis you can’t advocate for “scaffolding” to avoid problems.

Google this and consider how you can help put support in place . My son was considered too able to qualify for help as he’s not too bad at school. However we know him across all settings and he was struggling. So I applied for an ehcp for him and got it. Choice of secondary school based on provision (not distance) is a legitimate reason to apply as the LA can’t delegate this to the school. Pm me if you want to know more. Good luck

Update.
We have seen our Gp and he has referred us but agreed it will have to be a private referral due to not meeting threshold etc.
We will wait and see how long it takes to hear from them

I would suggest getting a recommended reputable OT to assess him for SPD and I would also ask them to observe him in school also make sure that he is observed in the playground too as this is important esp as they are left to their own devices and this can be a tough part of the day for our children.

It will cost money for the assessment/obs however the benefit is that as it private the OT is not held by the school purse strings and, it's awful to say, but you will get a genuine view of what is happening. For nearly two years I've been told my child "is fine in school" however the OT and EP say that my child is most definitely is not and have each given me four page reports with observations and recommendations. Now the school have to take notice and make changes.

I would also go for a private SEN assessment. What part of the country are you in? Happy to share my experiences with you by PM.

And diagnosis doesn't actually equal support.

Hi all
We have an appointment for a private assessment (part one of a two part process) next week- it was November but a cancelled appointment came up
Just wondering if anyone had any advice in general about preparing (eg making a list of Qs or examples of what we see at home) and also about how to explain it to my son without him feeling there is anything wrong with him or that we think that.
Feel a bit underprepared emotionally and practically cos we expected a longer wait
Thanks in advance

Hi
I’m sorry that I don’t have any advice to give you, but I’d be very interested to hear how you get on. My 6 year old Ds sounds similar to yours. He is also very bright, and I think that he is just presenting with asynchronous development, ie very articulate but emotionally and socially immature. Please let me know how you get on.

Hi.
Our report says that he is likely to be gifted (as in extremely able/above expected understanding) but also has strong indicators of asd type traits (from the social communication scale and observation) along with potential sensory and fine motor issues (from our discussion)
The key differentiator was rigid thinking and negative responses to change as well as one sided conversation- these are the outliers to most traits which can be mapped onto a gifted profile.
Wasn’t expecting such a lean toward asd tbh- thought they’d tell me I was overreacting. But I guess they know what to look for
At the end of the day he’s him. A label won’t change that but I’m starting to get a better sense of the drivers of some of his behaviour. Eg hadn’t realised to this point how stress or anxiety inducing some situations are for him leading to stubborn controlling behaviour.
We’ve opted for the full assessment so will report back end of October

Hi OP, have only just seen your thread - glad you are getting some answers. I just wanted to add that a lot of children do find things more stressful as they get older and may struggle to cope as they go into secondary school and things are less structured (eg much bigger school so lots of people around, having to move around the school to different classes etc). So getting as much info and ideas for helping your DS now will help enormously and you can start thinking about what sort of secondary school will suit him best.

Have you tried using any visual timetables for routine / day plans yet? We have a now / next / later board we use at home for DS (5) and school have made visual timetables setting out the whole day. You can get the materials online (we got ours from amazon) or make your own (our SLT is a big fan of just drawing pictures if you can't afford to buy things in.

The NAS have local branches and there is lots of support online too (a lot seems to be on Facebook).

I can’t thank you enough for all your help! Those ideas sound amazing- anything we can do to reduce the hour to two hour long meltdowns we have multiple times a week would be great. I’m wondering if you have any names of help groups or links (Facebook/ amazon) for the ideas you mentioned? Thanks again!

Hi, we are so lucky to have the internet to share ideas these days

I'm not great with links sorry but if you just search Amazon UK for visual timetables it has lots to choose from. We use the now / next / later for immediate things (eg toilet / get dressed / school) and we do have a big weekly planner on the wall but DS isn't aware enough of days and weeks yet for it to have much impact. Our SLT suggested making a circular days of the week one (with each day where numbers would go on a clock) to consolidate the idea that the routine repeats. I haven't seen any to buy but we'll make one when DS is ready.

For internet help groups you could start with your local authority. By law they have to have a "Local Offer" for children with SEN / disabilities including a parent / carer forum - hopefully the LA website will have a link to the forum website. Otherwise I would just search Facebook for autism (and NAS) and the name of your area (try town / county / borough and other local areas if they're close enough to go to things there). I found out about another informal parent / carer group just via our local town Facebook page as someone else had asked if there were local support groups (the group admins for the general page let people ask anonymously if you don't want busybodies chattering about it).

Thanks that’s great 😀
Obviously we don’t know if he will get a diagnosis yet but it’s good to know there are places to go to for advice and support along the way either way

You're welcome.

You don't necessarily need a diagnosis for some support services - just having some traits means some tips knowledgeable people can give you might help. My eldest is (probably) not on the spectrum but he definitely has some traits and we try to use anything helpful we find out along the way with our 5yo who definitely is. Things like visuals are being suggested to infant schools more generally now, for example, as they can help with all sorts of speech and communication issues. You know your DS needs some support and that's the important thing.

Hi there
Your DS sounds similar to mine who is nearly 6. He was diagnosed at 4 and half and I was worried about the fact that he presented himself really well at nursery (we started the assessment process when he was 3) - in fact they were really surprised when I said we getting him assessed. However you will be surprised at the little things that a professional will pick up on. the SALT observed him at nursery and noticed a few subtle things that highlighted to them that he actually was struggling, but trying not to show it. All members of the assessment team really took into account everything that we reported in terms of how he reacted to things - I think they assume that you wouldn't be there if there wasn't some kind of problem in the first place.

In terms of preparation I would suggest just having a list on the go maybe on your phone that you can add to as and when you remember anything that he does that could be relevant. Just note down a list of ALL of the things that have ever made you concerned and then you will have it to refer to when they are asking questions.

We have the same term time better vs holiday struggles. He used now and next in reception at school but never got into using them at home. This summer holidays I made a weekly chart of what we were going to do each day with pictures where possible, and he helped me make it at the beginning of each week which he enjoyed and think reduced the anxiety.

I also made a pot of written "Challenges" such as throw a ball in the air and catch it 30 times, bounce on the trampoline 100 times, read a book to a teddy, colour in a picture I have drawn for you, set a timer for 30 minutes and do a jigsaw puzzle in that time.....basically just things that he normally does but presented as Challenges seemed to make him want to help himself to them to get on with. Small treat or some kind of reward for completing each one.

Hope this helps and good luck with getting your diagnosis.