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.

Your daughter sounds exactly like my son! He has just turned 16, but I only had him diagnosed last year. He went on the waiting list in October 2022 and was told 4/5 Yr wait but NHS have started using outside companies to work through the list so he was actually assessed in June 2023.
Everything you have just described about your daughter is exactly the same as my son and is the reason I put off seeking diagnosis for so long. To me and those who know him, it was obvious from a young age he has ASD, but due to how high functioning he is, i was worried some random he had never met wouldn't be able to see what we all can see.
However the problems you've described there, such as being bright but the sudden fear of failure, and the sensory issues, (also the same as your daughters apart from needing ear defenders) these suddenly progressed once he hit year 10 at school and he became crippled with anxiety. This is when I decided to go for it with an assessment.
There was so much the assessor picked up on that I either hadn't Evan noticed myself, or I didn't expect her to notice, especially seen as my sons was conducted over zoom. We also had to fill out lengthy questionnaires and i had a separate appointment to my son with the assessor. This allowed me to at least make clear all the behaviours/traits my son has which I guess helped her build a picture before she spoke to him herself. He got his diagnosis 2 weeks after the assessment.
The assessment itself was very thorough, lots of speaking to my son, asking him questions, role play kind of situations to see how he would respond etc....his head of year who's been his main support all through school right from year 7 also provided a lot of good info.

Make sure school are on board with you, see if there is and adult there who knows your daughter well. Start racking your brains for anything you can remember from around 4 years onwards.

We had our DD assessed aged 10, it enabled us to secure extra adjustments at secondary school then a year later a EHCP (despite 3yrs of primary school saying she didn’t need it or would get it!) but alas she still couldn’t cope with all the transitions that secondary school have and is now in limbo whilst we home ed. It’s hard when you have a very academically able autistic girl. I’d recommend reading Dr Noemi Fishers work/books/social media

Thank you @Purpleraiin that's so reassuring. The school are good with DD but they aren't particularly receptive to the autism idea - mainly because she's achieving and isn't any trouble because is terrified of being in trouble of any kind. I suspect they'd say she was just anxious. She has a strong bond with one teacher who knows her well though

My daughter is older but I paid 2.5k last year for a private assessment and we came away with a ASD and ADHD diagnosis.

much of it is done prior to the appointment, with documents filled in by the parent the school and the child themselves ( not sure on the min age for that) I wish I had done it sooner. Before her life came crashing down in mental health crisis. The school and her CAMHS worker were all on agreement the assessment was needed.

Yes, I spent years telling schools (multiple) that DD2 has ASD. They said I was mad. Age 9 we walked into CAMHS (after school 3 believed us, finally) and the person was so convinced that he skipped 3 appointments and put her on the waiting list for assessment. Age 11, she was diagnosed. Now at 16 she is out of school on an EOTAS package provided by the LA.

DD3 is extremely bright but is waiting for Dx and is now out of school, going through the EHCP process.

Both were extremely compliant at school.

In the post below I will copy an extract from the NICE guidelines on how to identify autism. Go through it with a fine toothed comb. Highlight each item that applies to DD. Think of examples when she does these things, how she does them etc. Keep a diary of examples of everything that she does that you consider to be autistic. Evidence is needed to get a diagnosis, so collect it and make sure the assessor knows about all the things they may not see in the assessment room. Having said that if you are allowed to watch the ADOS you may be surprised about how autistic it makes DD appear. I didn’t think my child appeared that autistic. His education setting though I was mad when I said I thought he had autism. In the ADOS assessment it was like it was designed to make the autistic traits jump out and stare you in the face. The ADOS is better at highlighting autism in boys than girls though.

I don’t know how true it is but I keep hearing people say that LAs don’t accept private diagnoses. My DC’s school very much said that they go off need not diagnosis, but also that they would accept any private diagnoses and act upon recommendations in private reports. I have also heard of people being refused an NHS assessment if they’ve already got a private diagnosis. Again I don’t know how common this is or even if it’s just a myth. Just something to think about.

In my experience having a diagnosis helped me because I felt justified parenting in the way I did and it allows me to talk to DC about it and acknowledge that some things were harder for them etc and why that was. I also think it did open doors with support, even though it should be needs based. Getting a diagnosis early could therefore be helpful for that reason. With high functioning girls in particular they can often be fine in primary but then the wheels start falling off in secondary as the complexities of social interactions increase with age. That combined with being constantly taught by teachers who don’t know her half as well as her primary teachers, and the sensory side of secondary can cause a perfect storm. If you can be proactive rather than reactive and get a diagnosis, and then get all her needs identified and get any required support in place and any adjustments made before the wheels fall off that is optimum way of doing things for her mental health and education as she’s much less likely to burn out/drop out etc.

Box 3 Features suggesting possible autism in primary school children (aged 5 to 11 years or equivalent mental age)Social interaction and reciprocal communication behaviours
Spoken language

• Spoken language may be unusual in several ways:
• very limited use
• monotonous tone
• repetitive speech, frequent use of stereotyped (learnt) phrases, content dominated by excessive information on topics of own interest
• talking 'at' others rather than sharing a two-way conversation
• responses to others can seem rude or inappropriate.

Responding to others

• Reduced or absent response to other people's facial expression or feelings.
• Reduced or delayed response to name being called, despite normal hearing.
• Subtle difficulties in understanding other's intentions; may take things literally and misunderstand sarcasm or metaphor.
• Unusually negative response to the requests of others (demand avoidant behaviour).

Interacting with others

• Reduced or absent awareness of personal space, or unusually intolerant of people entering their personal space.
• Reduced or absent social interest in people, including children of his/her own age – may reject others; if interested in others, may approach others inappropriately, seeming to be aggressive or disruptive.
• Reduced or absent greeting and farewell behaviours.
• Reduced or absent awareness of socially expected behaviour.
• Reduced or absent ability to share in the social play or ideas of others, plays alone.
• Unable to adapt style of communication to social situations, for example may be overly formal or inappropriately familiar.
• Reduced or absent enjoyment of situations that most children like.

Eye contact, pointing and other gestures

• Reduced and poorly integrated gestures, facial expressions and body orientation, eye contact (looking at people's eyes when speaking) and speech used in social communication.
• Reduced or absent social use of eye contact, assuming adequate vision.
• Reduced or absent joint attention shown by lack of:
• gaze switching
• following a point (looking where the other person points to – may look at hand)
• using pointing at or showing objects to share interest.

Ideas and imagination

• Reduced or absent flexible imaginative play or creativity, although scenes seen on visual media (for example, television) may be re-enacted.
• Makes comments without awareness of social niceties or hierarchies.

Unusual or restricted interests and/or rigid and repetitive behaviours

• Repetitive 'stereotypical' movements such as hand flapping, body rocking while standing, spinning, finger flicking.
• Play repetitive and oriented towards objects rather than people.
• Over-focused or unusual interests.
• Rigid expectation that other children should adhere to rules of play.
• Excessive insistence on following own agenda.
• Extremes of emotional reactivity that are excessive for the circumstances.
• Strong preferences for familiar routines and things being 'just right'.
• Dislike of change, which often leads to anxiety or other forms of distress (including aggression).
• Over or under reaction to sensory stimuli, for example textures, sounds, smells.
• Excessive reaction to taste, smell, texture or appearance of food or extreme food fads.

Other factors that may support a concern about autism

• Unusual profile of skills or deficits (for example, social or motor coordination skills poorly developed, while particular areas of knowledge, reading or vocabulary skills are advanced for chronological or mental age).
• Social and emotional development more immature than other areas of development, excessive trusting (naivety), lack of common sense, less independent than peers.

Thanks @EMajor I did research on private diagnosis and they can't not accept the diagnosis as long as it's been done according to NICE guidelines. I believe the NHS are even using private assessors to get through waiting lists now.
I really do want to be pro active in diagnosis, but I also don't want to throw 2k down the drain 😩

They know what to look for don’t worry. I have 3 children diagnosed and all present very different. One is a complete masker and I worried they wouldn’t see what I see and knew, but they saw right through it and where able to point out all the wee subtle things that most people missed with him.

My son was exactly the same in primary school. Because he was no trouble and did well academically, he just sort of slipped into the background. I used to ask at parents evening if they had picked up on certain things I'd notice at home but they always told me no. I really started to feel like I was just making a big issue in my own head.
Thankfully he built a really strong bond with his head of year at high school right from the get go, and she noticed absolutely everything! Unfortunately that's where my sons problems also began though. He became more anxious, had a lot less tolerance for some kids and would find himself in a spot of trouble now and again for minor things that I now know were down to autism.
From how you have described your daughter, i would say everything is exactly the same as my son at that age. How is she with speaking to other people, especially strangers? And will she use eye contact and hold down a full blown conversation or is she quite short and blunt?

My DD sounds extremely similar. She was assessed today and didn't get a diagnosis. (Have posted separately about this). She actually had a high enough overall score to be just within the threshold but they felt it was heavily weighted towards the restricted/repetitive and sensory behaviours and not enough difficulties with language and communication to be diagnosed.

I have to say they seemed to spend a very long time discussing her and I'm still not convinced she doesn't have autism. It's actually left me with more questions than answers. I would say do your research very carefully and maybe see if you can find a provider that deals with complex cases. The was a private assessment and the provider I chose had good reviews but maybe I didn't look extensively enough. The best place I've heard of for girls assessment is the Lorna Wing Centre. I enquired but it was £3000 and a waiting list of several months.

Have you tried via the NHS too? My DD is still on the NHS waiting list so I can get her reassessed when she reaches the top of the lost (probably at least another 18 months) after she has started secondary school and see if they come to the same conclusion.

@SunnyZ this is what I'm afraid of with DD. A lot of her issues are sensory. I'm not sure she has enough issues with communication etc to get a diagnosis and sometimes I think she can have excellent perception of situations. But other times she takes things completely literally and can't see that someone is joking etc. no idea what to do for the best.

@Purpleraiin I don't see her around strangers much, but she was talking to an actor that was in character at a children's event at Christmas and I noticed that although she was having a full blown convo with him, she was also 'in character' and I found the exchange a bit bizarre. She was responding to him as if he was actually his character when logically she knew he wasn't. She also didn't make eye contact despite extending the conversation several times when it had reached its natural end really. It was a bit odd. But honestly I haven't seen her around many strangers. She likes chatting though and loves attention on her, so I doubt she'd ever be blunt.

@SunnyZ I can't find your post, but would be interested to read it if you could link it?

Not quite sure how to link a thread but it's on the SN board in SN chat.

Thanks for this info. We came away from our NHS autism assessment with no diagnosis two months ago but apparently they have to assess for other developmental disorders separately with separate referrals, so we are looking at a private assessment for DS to find out what is going on, and I'm not convinced he doesn't have it either because the assessment process they used was a) 20 minutes long, b) not slightly robust, and c) the paediatrician doing it seemed completely out of touch with reality because he told me "he is normal" and "he can't have autism, he is a good boy" (WTF who uses those words in the context of disability?!?!).

I'm worried we'll spend money on an assessment and be none the wiser.

Having read @EMajor's list I'm now even more confused as it describes my DD to a tee!

@SunnyZ it doesn't describe my daughter to a tee, but she would surely tick most of the boxes. I have a strong feeling my daughter wouldn't get diagnosed either if the basis was what you have described with your daughter.
I may put her on the nhs list, but it all seems a waste of time at the moment 😩 I know she won't cope with secondary, and I don't want her to fall apart mentally before she's likely to receive a diagnosis, but I also don't want to have to go down this road more than once, for her sake as well. She thinks she's autistic based on a book she has read.

@SisterMichaelsHabit that language sounds really unprofessional! I'm not surprised that you are doubting the quality of the assessment!

I think unfortunately there are still grey areas around the diagnosis of autism, particularly for girls and the process can still be subjective. A different provider may come to a different conclusion for your DD. I have to say I do understand where they are coming from as her good language and communication skills are what put me off from getting an assessment when she was younger. I'm not sure they gave full weight to the friendship difficulties that both she and I described. I also dont really understand what can be causing these difficulties that are so associated with autism if it's not autism. I am hoping that at least the report will.make some helpful suggestions for the areas where she does struggle.

@SunnyZ I agree with everything you've said and you've described why I'm so worried about going ahead with an assessment. My DD has a lot of social difficulties but she isn't aware of the extent of them really. I think she believes that it's just her class that's the issue and she hasn't found anyone to gel with. She does get on with other girls quite nicely in short spurts, like my friends children for example who we see a few times a year, but I'm not sure those children would count her as a friend or actually request to spend time with her. Yet my DD would describe them as very close friends. So essentially, when quizzed about her friendships she's aware she doesn't have many but wouldn't necessarily think that's her problem. And I try very hard not to draw attention to these things I see her struggling with because I don't want to 'coach' her in any way

Don’t worry, the clinicians won’t be ‘fooled’ by what you describe as high functioning. My DD sounds pretty similar, except we got to mid teens before we started to suspect autism. The initial questionnaire pre-assessment gave a low score due to her successful masking, but they knew it was still worth going to full assessment. As soon as we started going through the long parental interview, we could see from their reaction to our answers that they could see what was going on behind all her good behaviour, academic level etc etc.
The process was worth every penny for our family 👍

My daughter was older (13) when she was diagnosed but the clinician said it was very obvious even though she is bright and 'high functioning'. We were told that unless there was a 'reason to assess' (I think that was the term they used), they wouldn't do the process even though we went privately - our assessment started with a 15 minute phone call and she said if there wasn't some evidence based on that phone conversation she wouldn't progress.

She sounds v similar to my son. He got diagnosed at the start of secondary, after a long time on the local waiting list.

Tbh I hadn't thought he'd cope with mainstream secondary but he's y8 now and actually so far it's going better than we thought - he's made a few sweet and quirky friends (he also only had one friend at primary). Some aspects such as the timetable/structure suit him better than primary did, and generally teachers have been pretty good about making adjustments where needed.

I’m going to take a different tack here that getting the diagnosis for us was just a piece of paper initially it didn’t magically unlock any extra support in any form . primary school didn’t make any more adjustments as they couldn’t “see” it. Classic bright compliant girl who aced her SATs. Secondary school looked more at needs so we’re prepared to put in place many adjustments because it was becoming more obvious she couldn’t cope like a “NT” child. With or without the diagnosis I would research as much as possible how to support and parent a child who has these difficulties and really work with their strengths to build resilience which helps life confidence. It’s not easy either way especially when the hormones hit hard in 11-14yrs. Our DD is now unable to attend mainstream school as we had to remove her to prioritise her mental health, no one helps, the education system is broken so be prepared to not get any help even if you do get a diagnosis. It’s not a magic piece of paper it does to some part legitimise how hard it’s for them and you parenting but no one understands really except other parents going through it. So I would focus on supporting your child as best you can nurturing their strengths.