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.

I was going to say similar: maybe focus on getting needs met rather than the diagnosis if that is proving difficult, as having her needs met is ultimately the goal. It might be harder without a diagnosis but in theory it should still be possible. People are messy. We don’t fit into neat little boxes, so it’s perfectly possible for people to have quite severe issues in some areas but no issues in others.

If you are seeing issues outside of school, which you believe are caused by school - inability to go to school, aggression after school, anxiety etc -keep on at school until they do something about it. If you notice particular skills are lacking eg social skills, fine motor skills, whatever, again keep pushing for interventions in those areas. Look at the Autism Education Trust’s website and see which bits would be helpful and request that they happen. You have to be a broken record sometimes, even with a diagnosis. You could even request an EHCP yourself as DC only need to possibly have SEN for them to assess. You can have SEN, have autistic traits but not meet the diagnostic criteria for autism.

I’ve just noticed you said she won’t cope with secondary. If you think this is the case I would save your money just now, put in a request for an ECHNA yourself, not through school. You will undoubtedly have to appeal a decision not to assess, which will take a while. Once that’s done you will possibly then have to appeal again to get the content of the plan as you wish it to be. At that point get your own Educational Psychologist, SALT and OT reports done privately. Use the saved money for these assessments and any legal help you need.

Thanks @EMajor and others who have said to focus more on getting needs met. I should have said that this is what I have been doing in the back ground. The school have listened and we are in the beginning stages of seeing what we can do there. Similarly, our parenting of her and her needs is why she isn't in crisis currently, we have really shaped our family life over the years around her needs and capabilities.
The assessment and diagnosis seems important to her (she really wants one). She feels strongly she is autistic and says it's important to her identity. For us, as you mentioned, it would legitimise some of our parenting but I always try hard not to care what others might think.
There has been some really helpful input here and it's given me support and information, so thank you all.
I have another meeting with her school soon, as things are escalating so it'll be good to see what they suggest.

@SkiGirl009 I really hear you about the school system. The secondary's here seem to be run like prison camps and it's already giving my daughter huge amounts of anxiety simply hearing stories from those with older siblings. Home school is on the table if the need arises, but obviously won't be our first choice. I am currently trying to upskill to prepare for a private online school or the like financially. The school system is broken. I don't know what the right answers are

I don't think you need to worry. No assessor who is following proper guidelines is going to misdiagnose on the basus of a young person having some "high function" behaviours. The spectrum is huge.

However, be aware that a diagnosis doesn't change much. If your child needs adjustments to be able to function at school then the school is obliged to make those adjustments. A diagnosis is not required for that. If there are adjustments that your dd would benefit from but that the school is unwilling to provide due to cost, a diagnosis will not force them to act, only an EHCP will. You may want to consider possibly keeping your money and sticking with the 4 year wait time for diagnosis because most services and opportunities for youngsters with autism are open to those who are on the waiting list because everyone knows how long the waits are. Meanwhile spending that money on an Educational Psychologist report on what your DDs actual needs are, which could be contributed to an EHCP, might be more useful?

There's a lot of autistic traits in what you've listed.

I'd say whatever route you take keep perusing a diagnosis.

My DD was diagnosed ADHD and ASD when she was 10. She was mostly fine with a bit of extra support but not particularly academic.

At age 13 the hormones kicked in and the autistic traits she had just multiplied practically over night. In year 10 the wheels well and truly came off the tracks and school attendance plummeted. In fact all social contact and even leaving the house plummeted.

If it weren't for her diagnosis we'd probably be going through the courts for low school attendance. Being recognised as neuro diverse has helped us immensely in that respect.

Unfortunately there's not a lot of practical support available but a diagnosis before Secondary school would be a very good idea.

My 6yo son just recently got diagnosed with autism (level 1/high functioning). He didn't have major delays but was a little slow with speech, waving, pointing etc. and very ahead with his alphabet and numbers (numbers are his obsession). He is also quite outgoing loves playing with other children and isn't violent, but it's the way he plays with them that makes him autistic despite being social, he insists on others playing how he wants them to play/tells them what to do, he dominates conversation with his likes/interests and doesn't really chat back and forth properly, he can react badly (get upset/possibly scream/whinge) to being touched/too much touching by other children, he doesn't really have any friends at school yet (he wants some of his classmates to be friends but it seems they don't reciprocate).

I work in an autism assessment team. We see quite a few girls who are like your dd. When done correctly the process is rigorous. We don't use high functioning as a term as that minimises the difficulties. If your dd is asking for assessment it's likely she has a high level of awareness and is possibly masking the social communication and interaction difficulties she is experiencing. The other bits are less easy to mask. I would go for the assessment. She won't get a diagnosis unless she meets criteria.

I think getting as much evidence from the school as possible will be helpful. We didn't get much from school.

Where my daughter was assessed they did the initial screening for ASD and ADHD for £460 and then told us whether it was worth continuing.

My daughter is exceeding across the board at school and is generally a high achieving child (sporty and musical). She is sociable and creative. She didn't meet ADOS threshold (scored low) but she was diagnosed with ASD. They were able to hear what her significant challenges are in her life and how it impacts her. We ummed and aahed for ages before having her assessed as she does not have many autistic traits but those she does makes her life (and ours) very tricky at times.

She's actually found life much easier since her diagnosis as feels more able to articulate how she feels and we (and others) are perhaps more willing to make adjustments whereas they weren't all before as at face value she doesn't appear to need any.

They told me it would be 2 years wait for a diagnosis, but my eldest’s case actually got seen by the panel in 7 months. It’s only the start of the fight though, getting an EHCP has proven to be a greater issue with the school (who have recognised his ASD since reception yet don’t seem to understand how to support him as an individual…). Is your daughter in receipt of DLA? You don’t need a diagnosis to apply and if she did/does qualify then that money could be saved for a private assessment.

I would stop using the phrase ‘high functioning’, as a pp said it does undermine the disability. Autism is autism, at any point a child or adult who is seen as ‘high functioning’ can burnout, have high difficulties in any functioning and even become non-verbal when fully verbal beforehand. There is so much more pressure on autistic people who seem to be ‘functioning’ to just carry on despite having a disability. And somewhat offensive to children like my son who have global delays, he isn’t ‘unfunctioning’ in comparison to autistic children who present more typically.

Sounds not dissimilar to DS.

School always insisted he was doing fine - I never had concerns about him academically, but asked repeatedly about how he was doing socially. Always reassured.

Then his behaviour at home worsened, I got in touch with the school about that, and after a meeting with his teacher and the ALNCO they agreed a referral for an autism assessment was appropriate.

Unfortunately things got a lot worse with meltdowns and school refusal to the point that the school put a lot of work in to get DS seen sooner. He ended up waiting a year rather than two plus. The paediatrician gave us a diagnosis on the first appointment, which she said was unusual, but the evidence was already there from the work the school had done, the camhs assessment etc.

It might be worth pushing to get an NHS referral even if you're planning on going private, just because you have to fill in a very in depth form and the NHS will decide from that whether to add your child to the waiting list or not from that. If they're accepted on the waiting list the chances of them getting a diagnosis is presumably higher than if they're turned down so it could help you make a decision. For us at least this part didn't take long - we heard back with the decision within weeks.

Also check with the school if they'll accept a private diagnosis, ours said they wouldn't.

@SpeedyDrama it's hard to describe high functioning without saying it, most people seemed to use the same terminology but I do understand what you mean. However, I think if you read my post you could see I am far from minimising how my daughter, or others who would appear in the same place, are functioning, so I think within that context you can see what I was trying to describe, without causing offence.

@SpeedyDrama *without meaning to cause offence

My DD recently got diagnosed. Took a year to get a diagnosis because our NHS trust are out sourcing to private companies. The one we had were fantastic and provided a diagnosis on the day of DDs interview. I don't think you need to worry about a private diagnosis not being taken seriously. The only thing I'd say is use a private company with good reviews because I'v heard some don't write a good report afterwards which leaves the school with little/no recommendations.

The process was so thorough and in the interview they picked up things I hadn't even noticed and noticed her masking.

Agree that the school needs to put in adjustments now before diagnosis. If you do go private make sure you let the school know and ask them to pass on 'evidence'. They'll have to fill out a questionnaire which will be used in the diagnosis so no good if they've buried their head and write no concerns.

My DD is intelligent but quite clearly autistic so the diagnosis wasn't a surprise. Having gone through the process I do think you can get a diagnosis where it's less obvious though. They really recognised that it's a spectrum and things like being extroverted don't rule it out.

@EilonwyWithRedGoldHair thank you, I may go ahead with the nhs referral. I can self refer in our area with no need for GP involvement. Presumably they then decide whether they accept it based on the questionnaire answers. I may well go ahead with that in the background having spoken to you all

My son was assessed for both ADHD and ASD privately and did not meet the diagnostic criteria for ASD. He did get diagnosis with SPD after an OT assessment. He has ASD strong traits and probably could get the diagnosis now he is older however he is in a specialist school which is meeting needs so the diagnosis matters less.
His younger brother is on the NHS waiting list and has a similar presentation but I have prioritised paying for a private Ed Psych report rather than an ASD assessment. A decent EHCP is more helpful to him right now than a diagnosis (a diagnosis is not needed for an EHCP unless you want a specific autism school where it is required for admission). If you can wait for a diagnosis I'd recommend considering OT, SALT and Ed psych assessments instead especially if school is causing your daughter problems.

@gregtile thank you. It's been great to get this info about the OT reports etc because I'm at the beginning of this journey so was just going for diagnosis.
My DD will mostly struggle with transitions / change at school and loud and unknown environments. She is also terrified of punishment or getting things wrong. It's hard to know what special considerations could be put in place when it seems to be the environment as a whole she'll struggle with. Academically she won't need help. I think the primary school will help us and really nurture her anxieties as they have been so far, but secondary terrifies me as they see nothing but a number or grade where we are

If the environment is the problem then you may be you want to consider a smaller school, maybe an independent mainstream or independent specialist school that caters for academically able children. In which case you need to educate yourself on the EHCP process- join your local EHCP facebook groups and look at IPSEA & SOSSEN websites for the best guidance.

For us the wheels came off at the beginning of year 7. We are on the waiting list still. If you think she will get a DX before starting secondary on the NHS, I would save my money but if unlikely, better to have it in place to get better support. In theory, support should be given based on need but s formal DX is a huge help these days .

One of the reasons the school were so keen for DS to be seen sooner for assessment is that he's going up to secondary school this year and we needed the diagnosis to have any chance of getting him into the special ASD unit. We just have to keep our fingers crossed - everyone who has worked with him agrees he can't cope with a mainstream secondary school.

Apologies for not reading the full thread and this may have been said but having worked with a consultant who diagnoses adhd and autism, and having a late adhd diagnosis myself, the criteria for diagnosing girls has come on and still improving from what it used to be. Taking into account that girls will 'mask' more to fit in and the assessments are so in depth a diagnostician should be able to recognise it. In my humble and only vaguely experienced opinion I'd say you've got good grounds to seek diagnosis.

When my son was diagnosed (nhs paediatrician) it was a lengthy process . I had to speak about him to the dr before she met us both . Then she met with him alone a few times and also watched him at school .
she then met with me again and only after collating all this evidence was he diagnosed .

it seems much easier now to get a diagnosis if you pay privately .

@inlotsofknots exampkes of adjustments my DD got without a EHCP in year 7 - invited to go in early into breakfast club for send kids it removed the noisy crush transition into school. A TA to touch base with in quiet send zone. Leaving 5mins before bell went at end of day out main door again to avoid gate crush. After 6 months ended up with half the timetable stripped out just maths/ English/ science and pe / music left. She couldn’t cope with the other subjects that also removed the associated homework which was a huge battle at home. A quiet room at lunchtime & break time space which had a send TA in the room to help if required. Some small group 1:3/6 interventions stuff in send zone instead of main lessons. We got all this based on “need” whilst the assessment request for EHCP was being requested.,unfortunately it wasn’t enough to keep her in school as she moved into the next year. So there’s lots you can ask for without diagnosis or a EHCP but both do help. Good luck it’s a tricky road to navigate sadly.

I'm a recently diagnosed adult. Went to grammar school. Got a degree. Life has basically been fine but, it would have really helped me if I'd had a diagnosis many years ago. The summary of my diagnosis was that I have significant difficulties but I have coped with life because I am intelligent.