Help with autism assessment

[inlotsofknots]

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I believe my 8 year old DD has autism. She is high functioning but has quite profound sensory issues (wears ear defenders in quite a few scenarios, hates clothes, hates sun cream), lots of sensory seeking behaviours like being obsessed with fidgets and chewing. She's bright but has a crippling fear of failure and is starting to perform less well due to finding the classroom environment chaotic and distracting. She has one friend. She will only tolerate a few foods.

I have two younger daughters so do have experience with other children who respond differently in a more typical way.

The assessor I've found is multidisciplinary and adheres fully to NICE guidelines / ADOS 2 etc. My concern is that the assessment is 2k (nhs waiting list is 4 years in this area) and with my DD being high functioning I'm wondering whether she'll actually come away with a diagnosis. For instance, developmentally she had no delays at all - in fact - quite the opposite. She had incredibly advanced speech and hit all her milestones fine, although has struggled a bit dexterity wise, but not where anyone has noticed except us in immediate family.

She is also quite extroverted and will try to make friends easily and historically has enjoyed social situations, although is less enthusiastic these days and doesn't have many lasting friendships. (Just 1)

I guess I'm wondering if anyone can provide me with advice regarding their 'high functioning' autistic children? Have I got it completely wrong and am I wasting time and money on this assessment? Would my DD be in with no chance of diagnosis due to being bright, potentially social and able to engage? Obviously realise no one can say whether she'd get diagnosed but I'm worried that I'm chasing something that won't happen.

She's starting to hate school and get tearful about going but is unable to really explain why. I'm scared of trying to get an assessment but being laughed off really.

Thanks in advance for anyone with any advice that's been through this. Interested to hear from those in similar situations whether you received a diagnosis - or not - all would be useful.

Things that helped in primary school, going in early via reception so was first in classroom often read a book or did sudoku puzzle. Other kids and their noise would then build up slowly around her. Being sent out of the classroom on “errands” as an excuse to get a sensory break if struggling. They tried emotional regulation cards but tbh they are pretty useless if the teacher just says what’s wrong why are you red today? The whole point of the card was because she’s so overwhelmed she couldn’t talk just needed to be removed from the room for 20mins plus to be quiet or fidget/sensory break. But she’d go mute & shrug her shoulders because when dysregulated the first thing she lost was her voice. Sadly primary had little understanding of ways to help her regulate herself, secondary was actually better for that because her sensory difficulties were more obviously out of step with her peers by then.

I don't know whether your dd is autistic but there are other conditions that overlap and can mimic especially in younger children. The social aspect is fairly important to an autism diagnosis but girls in particular sometimes mask. I have an autistic daughter and she was never sociable so I don't have experience of that!

Unfortunately autism seems to have become the diagnosis de jour, my that I mean rather than looking at people as individuals and considering a plethora of psychological conditions, every kid in who doesn't conform seems to be labelled as autistic. It personally annoys me because my dd whilst she retains her autism diagnosis on paper, has as an adult been diagnosed with a complex mental health condition which if she had help with younger would have really improved her quality of life, instead she was offered the one size fits nobody autism programme in my area and that therapy is not recommended at all for her now diagnosed condition. In fact it was chance she got properly diagnosed, down to being willing to be a guinea pig for psychiatry students

Thanks @SkiGirl009 that's really helpful. I happen to know how terrible the local secondary is for SEND so whilst I could expect those adjustments with her primary school, who are so far supportive, I don't think that'll happen in secondary. They are known locally to be bad in this area. Therefore we are already looking at other schools. Sadly no grammar in our area and we cannot afford an independent school. Home Ed and something like minerva May possibly be an option in a few years if needed.

I think I will hold off on the private assessment for now after advice here, but go ahead with self referring on the nhs in the meantime as may as well be on the list. I'll focus on getting her needs met at primary and looking at secondary options for now. It is so tricky because on the sensory / repetitive behaviour side of things my daughter would tick every box, but on the language / social side of things she probably wouldn't meet the criteria. Although she doesn't have many friends, she's extrovert, which i guess isn't typical of autism so perhaps she isn't autistic at all. However, she feels she is and obviously it's what I've been led to explore due to her severe sensory issues.

Thanks all

If you decide to go ahead in the future, just check the private assessors are familiar with autism in girls. You may want to take a look at the autistic girls network.
I offer autism assessments and see many young women who’s social communication is not obviously difficult, due to masking. So a good assessor should be able to pull apart what is going on. Good luck.

Also just to say, lots of autistic girls/women have many friends. Autism doesn’t mean being antisocial. It’s more about understanding the relationship and why people are reacting / behaving in some way. I find social differences tend to emerge more late primary school/start of secondary school.

Thank you @SRK16 I think I definitely don't know whether she is masking at school! I have asked her if she can read people in her opinion using facial expressions etc. she said she spends a long time looking at her peers faces to get the measure or them. Sometimes she said they give her funny looks because of it. But once she's studied them enough she said she can tell how they're feeling and so knows when they're happy or excited or annoyed and can tell that with ease. I honestly didn't know what to make of that and whether that shows that she's struggling with communication or actually doing quite well in that area!!

The assessors I've found are excellent and also still work for nhs. Very experienced in girls as their private waiting list is now mostly girls!

If you are in England you can use right to choose through your GP. https://www.clinical-partners.co.uk/nhs-services/NHS-partnerships clinical partners can do adhd and asd assessments for children as part of the scheme and it bypasses the wait time, I heard it was a number of months not years! I would go to the adhd UK website https://adhduk.co.uk/right-to-choose/ as it has information about the process as it will help getting the GP to do the referral if they haven't done one before.

I would be wary using private assessment for adhd as some health authorities and Gp are now refusing to take on shared care post diagnosis. We’ve recently been looking into it and it’s very expensive to pay for ongoing adhd meds if they become required even for a child. There’s a FB group with lots of chatter around right to choose options for children it maybe worth joining.

@SkiGirl009 my post wasn't about ADHD, but it's good to know as may be relevant to someone else on the board or reading this at a later date. Mine was around private assessment for autism only at this stage. Thanks

My DS sounds similar and we paid similar for diagnosis, although when he was older - he was 14 when we did it. You've had a lot of good advice already so the only thing I'll add is that the lady who was leading on the diagnosis said that the 'high functioning' was partly about context - he was able to function that way because of the scaffolding we'd already put around him to help him cope - the type of schools we'd sent him to, the way we parent, not pressuring him into situations where he couldn't cope etc - so it's worth keeping in mind that they might not function so highly in other situations without that support. I guess what I'm saying is that your DD's autism should be recognised regardless of how well she may seem to be coping with it overall, because there may be times when that's not the case and just knowing there's a reason and therefore knowing better how to deal with it and to access help is of value.

I was going to add that secondary schools have a limited capacity to create asd friendly environments and the noise and bright lights in particular are an issue at my present school.
But you seem very clued up on this.
It may be that your local authority has asd provision in a mainstream or a specific school for asd students. You would definitely need an ehcp to ask for those provisions.

There is a large overlap on “symptoms” of ADHD & ASD it’s worth having a read around them. I wasn’t aware of this when DD got assessed for ASD it’s only a couple of years later aged 11-12 I’ve realised she also ticks a very large number of adhd boxes when yet again you look at the more female presentation of it instead of the stereotypical noisy boy who doesn’t stop moving presentation. All part of neurodiversity and often co-diagnosed now.

We are in the middle of the NHS process and so can't say yet whether my DS who sounds pretty similar to your DD will get a diagnosis or not. We were told wait list 2 years and only actually been 4 months so fingers crossed you can get seen soon

Someone on a FB group I'm on has shared with me a list of the diagnostic criteria if it's helpful.

From what I understand from my DD's assessment she had difficulties in all four of the 'B' areas, which are around restricted/repetitive behaviour and sensory issues (you need to show 2 out of 4 for diagnosis) but only 2 of the 3 'A' areas, which are related to social communication (you need to show difficulties in all three areas for diagnosis). Therefore my DD was not given a diagnosis of autism.

She sounds similar to my 8 yr old dd.

She got diagnosed with asc by nhs at 7 after a 20 month wait. It was 16 weeks for first assessment then 16 months for the 2nd.

At the time I wasn’t convinced she was autistic or that they would diagnose her. She’s very sociable too. She definitely has adhd (but isn’t diagnosed) but that was the main thing I could see as both her dad and I have it so I know what to look for. Since her autism diagnosis and learning more I am noticing a lot more signs though.

She was only referred because she was causing trouble at her old school. Her new school is more supportive and calm so she hasn’t had any behaviour problems for 2 years at school so I wonder if it would have been picked up now. It definitely carries more weight if you have school support.

Support at school should be regardless of diagnosis but we have found we’ve had more support since she has been diagnosed due to resources being spread thinly. We’ve also had help from outside agencies.

I haven’t read all the previous comments but it’s worth getting her referred to the NHS and looking at right to choose. There’s a list online about which places assess children and which cover autism.
https://adhduk.co.uk/right-to-choose/
At a glance evolve psychology and pscion seem to assess children for asc for the nhs.
You might have to travel but I know a few who have done this. There’s also a charity offering assessment if you are on a low income. https://www.caudwellchildren.com/services-autism/

We have just recently had a private autism and ADHD diagnosis privately for our DC.
The school have accepted and acted on all recommendations- I did check if they would before I paid it, as like you I worried about ‘wasting’ the money.
The company that I used did a pre screening assessment for £250 which basically asked you lots of questions and told you how high they scored on each criteria for ADOS etc- if you then proceeded with the assessment the £250 was taken off the final price- might be worth seeing if that is an option

To add the CAHMS waiting list in my area has just hit 5 years

@SunnyZ thanks that is useful. It's the social side I'm not sure about. I honestly wouldnt know the answers as I don't see her with strangers often and as I said, she's able to get along with new girls in short bursts, but doesn't seem to have actual friendships aside from one intense one. She is fairly social and keen to interact socially, she doesn't like being alone, so that feels like she wouldn't fit the criteria.

Mindful that others have said that assessors pulled things from their children that they hadn't noticed, so all feels like guess work. I'm going to hold back for a while

As it’s such a long wait there’s no harm in getting referred and then keeping note of things you notice in the meantime. Go to some free online talks about autism in girls or join local Facebook groups to learn more. That’s what I’ve done and I’ve learnt a lot.

Theres also lots of subtle things that are coming to light now she’s older and in year 3 that I didn’t notice before. I think it’s because girls become quite socially sophisticated at this age.

I think they can generally see through masking even if your DD appears "ok". The not being able to form friendships would fit into ine if the "A" criteria. As you said, it's difficult to know how they will interact with strangers as we don't get to observe that normally. I thought my DD wouldn't talk to them much but apparently she held a good back and forth conversation!

I honestly wouldn't be put off by the social side of things. That could just be how your Dd is, or she could be very good at masking.
I would have always said my son was fairly sociable at primary school age. He'd happily play out after school, in school he had his best friend and slotted into every single group but would flit about them all. He's kind and empathetic and he would use that to his advantage, which resulted in just about everyone liking him across several year groups. This would come across to myself and teachers that he had great friendships, but the reality was, there was nothing deep and meaningful there. He just enjoyed being kind and helpful, and others liked to go to him as they knew him to be kind.

There are so many elements that were looked into during the assessment for my son when it came down to the social side. If they based it off him having friends and being able to have a convo he would have came across perfectly fine socially. They were very thorough.

Definetly agree with others about focusing on what you can do to help. Primary school was a breeze for us and we didn't need any extra help put in place, secondary was a toally different matter though and we really werent prepared for that. What year is your DD In now?
Also agree with getting her on the NHS list either way. Another lady mentioned above that their child's assessment was outsourced within 7 months to a private company. I can't remember if I mentioned but this also happened with my son.

I've not read all the comments but if I may say..

I acknowledge your child is in her formative years and think youre so perceptive to pick up on her behaviours I feel you have a good way of measuring against your Ds siblings.

I think it's a shame that sometimes you need an assessment in order to receive change. Hopefully it is enough for the school and home to male adaptations now and not say you need a, costly. assessment first.
Seems you already have made environmental changes and I found just knowing the term ASD was enough to get insights from the Internet and books in order to manage daily life.

Having had the assessment done on the NHS and receiving ASD diagnosis I actually found the assessment to be a poor indicator. i was not my usual self during .
What was a reliable qualitative observational research that led to getting the assesment was my year of 1-2-1 medical support where the specialist picked up on ASD traits
(which i later, now knowing ASD better realise which ones they were and seems so obvious)
however that means nothing without an assessor being able to say 'As per ados 2 assessment I confirm that ...'
Seems bizarre that a 2 hour one off assesment when youve come from whatever life event or palava and sat down to perform rather humiliating tasks and the observation of the assessor in the written report is describing someone late teens, handling infant toys and books, is aware they are being assessed and up until this recent climate of woke acceptance has had to be resilient and so quirks aren't always visible. An example, I was selected in school as headgirl, showed stakeholders around at events and in the work place, comforted mums whose children are taken into services etc, yet I didn't have eye contact in the exam and didn't ask them to elaborate on their phobia they randomly Brought it up. I also didn't perform the 'show me' task how I actually would because I was aware my fingernails were dirty from preparing soups

Being under 18 your child (and you) will be eligible for subsidised services and educational help. However for many you get diagnosed and then left without any life help, yo still have to suffer silently adapting to neurotypical designed life.
Please don't spend 600-1800 on an assessment.

If anything you can have someone perform the straightforward assessment on your daugter, film it then seek opinion.

You may be unfortunate and not have a good specialist, some can see through masking some are very cold and clinical.

I didn't have to wait for mine but I certainly would pay for it or rush to Harley street. As others have said start researching now, lot more help online that at GPs. Find a good school. Personally a smaller school that had a good timetable and no age spans of 11-18 but 4-12 / 13-16 / 16- 18 helped for me.
I also prefered tye schools where your sports kit was kept at school, locker was in a class room, meals were served at tables with name placements, no coins needed.

Your description of your daughters primary school experience is similar to mine in the workplace ten years out of school.
Ultimately any work has seen me burnout, I asked for adaptations but was made to feel difficult and the type if work didn't always allow to step out, ultimately they tried to demote me rather than accommodate.
Next job I suffer silently, tactfully finding quiet moments disgusted as tea making, using the farthest bathroom etc., unable to ask for lights to be reduced or to work in a room away from booming radio 1.

There's a sudden surge in ASD awareness probably of the back of all the wokiness, so maybe it will force schools and employers to seek to understand and better accommodate us. At the same time I fear they will just go with whatever the first google result is and form their opinion of an ASD from that. ASD baseline is different to an NT and one ASDs struggles is different to another ASDs struggles

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April sees Autism awareness week so definitely put in for an assesment and the overpriced private facilities will hopefully take on more cases.

I actually found my report to be useful and felt they left it too long after the assesment to write up because there was some errors in recounting my history. 80% was repeating what I said 10% describing what ADOS is 1% assesment outcome and 4% as in 2 bullet points of recommendations (of which I had imllented in my life 7 years prior)

No golden pass to show for help or be accommodated like a physical ailment and disabled parking so they can function as best as possible. No real help in workplace environment issues like somebody with a slipped disc might get. No society empathy like dogs receive on fireworks night or a widower or miscarriage mother may receive.
My problems were still there after diagnosis. If ASD had come onto my radar before then I'd have been as satisfied as just knowing this term as well as introversion has helped me but until recently it was something boys had but we didn't know much about it..