Does ASD assessment take account of differing presentation in girls?

[Whatafustercluck]

4yo dd is undiagnosed and we're considering next steps. We're worried that she doesn't present as 'autistic enough' iyswim? No presentation of symptoms at school, classic masking, she's quite the extravert so doesn't fit the mould. But we're increasingly finding some of her SPD behaviours quite debilitating, and she can flip out on the turn of a coin with a moment's notice. Lots of problems with transition, lots of demand avoidance etc but none of it happens at school. GP won't refer, stating she's too young.

I have zero experience/ knowledge of the referral process and what we can expect from assessment. My concern is whether modern assessment takes account of how ASD can present very differently in girls. We are lost and don't feel we have the skills to support her well enough to thrive. This afternoon she travelled back from my parents in my car without a seatbelt on and she had removed her jumped and top because of sensory problems (despite having previously been fine wearing them). I desperately want to be able to help her, and feel like I'm letting her down because nothing seems to work. I have a private GP appointment with a female GP on Sunday, but not sure what to expect from here.

Thanks for reading.

I should clarify - no developmental delays, early talker, makes friends easily (but increasingly she's concerned about her friends no longer liking her/ wanting to play with her). Emotionally very explosive though. Lots and lots of 'rituals' built into her day, items that she clings to for security etc.

Are you going for private assessment? Lorna Wing Centre specialises in assessing girls and women.

If not, ask the GP who is referring you whether the team they nominate has a good knowledge of the presentation in girls.

The more I find out about waiting times, the more I'm thinking we'll go private even if it means taking out a loan. We can't continue as we are, with no diagnosis and therefore no specialist advice to support us. I have no idea what it costs though.

We get access to private GP appointments through work, so that's a start. And I was specific about talking to a female GP because our own (male) GP fixated on our parenting and whether there were rewards and consequences for her behaviour (damn, if only we'd thought of that 🙄).

List every difference she has compared to her peers and take that with you to the female GP.
See how many fit into these categories, e.g could what you referred to as her rituals and needing comfort objects actually be classed as repetitive and restricted behaviour (I'd think they were a good indicator)

Emotionally explosive could suggest difficulties with communication and social interaction, her expectations of what's about to happen + those being different to the reality = emotional turmoil, meltdown or shutdown.
www.autism.org.uk/advice-and-guidance/what-is-autism

Ask the GP about the options for referral, ideally you can choose to pay to be assessed by a team that also diagnose for the NHS.

It's very common for school to see nothing and say she's fine. there's vast chasm of knowledge of autism in schools ranging from brilliant to dire. Most only notice if a child lags academically and generally they're not bothered about much else unless behaviour is seriously disruptive.

I don't know if you've found this yet, but it gives an idea of what's possibly available in your area. www.autism.org.uk/directory, as should your County Council's Local Offer page.

Good Luck for tomorrow, don't be fobbed off.

What kind of support are you wanting? Because many DC are diagnosed and promptly discharged.

School support should be needs led, not diagnosis based. Holding it together at school and exploding at home suggests there are unmet needs at school. Have you spoken to the SENCO? If you think DD needs more support you can apply for an EHCNA.

In some areas you can self refer to SALT and OT - although not all CCGs commission sensory OT provision.

@Imitatingdory I know the diagnosis is only the first step and at this stage it doesn't appear that she needs support at school (although an understanding on their part that uniform refusal is a symptom of a bigger problem rather than her misbehaving deliberately just for us would be welcome). I'm looking for tailored advice on how we can better support her at home, while maintaining our own sanity. Nobody yet, for example, can suggest how we deal with the seatbelt and uniform refusal when it happens. We simply don't have enough knowledge, guided by professionals, as to what we should and shouldn't be doing. We're reading a lot of course, and trying different things as a result of our own research, but we feel people may be less inclined to brush us off as rubbish parents if we have a confirmed diagnosis. I also want to ensure we know what we're dealing with so we can, if necessary, call on additional support/ advice as she gets older, since older undiagnosed girls can suffer greatly with mental health issues.

Thanks so much for your advice @BlankTimes.

Sorry, should also have said that yes we've spoken to the Senco and she doesn't believe there's anything wrong, pretty much dismissed it as separation anxiety.

Oh I understand the need for a diagnosis for DD/you/others understanding DD, but support often isn't forthcoming following a diagnosis, many teams just discharge, so I'm not sure I would get in focus debt for a private assessment. If you were going to spend that type of money I think it would be better spent on things like OT, especially since many of DD's difficulties appear to be sensory, and wait for a NHS ASD assessment.

I would suggest there are unmet needs at school, and if they were met and support given home life would be easier. Would DD find going in a quieter entrance easier, or a bit earlier or later?

You need a crelling harness for the car.

Have you asked in writing about reasonable adjustments to uniform? Usually asking in writing so you have a paper trail means you get further. A diagnosis isn't needed for that, whether it is autism or seperation anxiety they acknowledge DD has additional needs they need to make adjustmennts otherwise you/they risk school refusal. For example, allowing a plain t shirt in the same colour instead of a polo shirt or shirt or joggers/leggings instead of school trousers etc. Can DD articulate what specifically she struggles with? Some DC find softer clothing helps or skin kind ones. Others find a t shirt under their polo/shirt helps. Seamless socks etc.

I agree with the points Imitatingdory has made. Definitely create a paper trail with school.

A good diagnostic report, even "only" a private paediatric sensory OT report for now, should outline all difficulties the child faces within the OT's remit, and suggest interventions. It should involve clinical observations, which involves observing the child in 2 settings usually at school as well as at home and involves several tests. For example my DD's report contained gross and fine motor co-ordination, posture, Visual Motor Skills, Sensory Processing, behaviour and emotional responses. It was a long time ago, she's adult now, so before paying for an assessment, ask which areas the assessment will cover.

The recommendations and interventions for school from that report should then be given to the school so they can put interventions into place to help your daughter. Senco may not "see" any sensory issues that you point out, but she will have to take notice of a medical report.

This is a great website for OT interventions, lots of explanatory info too. www.theottoolbox.com/about-us/

I've just had DD2 go through the process - dream kid in class - compliant, placid, absolutely desperate to please and do the right things and be "good"... which are the sources of huge anxiety for her when she gets home - but she doesn't want to make the school adults feel sad so masks the crap out of it at school.

We went privately and they DID see through the masking strategies at school and that she met the criteria for the diagnosis.

Thank you everyone for your advice and feedback, we're trying hard to navigate a confusing territory so knowing we're not alone is a huge help.

I now have a referral letter from the private GP for paediatrics which I can take to our own GP, so I've called my local GP today to make an appointment with a female doctor this time so I can get the ball rolling with the NHS. In the meantime we'll also look at costs for private paeds consultation. The issue we have with this is that we just don't know who out there is 'good' - and I'm unsure whether we can dip in and out of Lorna Wing or would have to pay for the entire assessment. Either way, the private GP said you'd normally start with paediatrics so we'll take it from here.

Back to school today and a return of the same behaviours, including the seatbelt and uniform refusal. We have a meeting with the school teacher, senco and family worker again tomorrow. They're going to try a reward mechanism for getting into her uniform at home every day. Having tried rewards ourselves, we already know this will have limited success.

Thanks for starting this thread, lots of good information.

My daughter is currently going through the autism assessment via the nhs, ados next week, so will update you when I can as my daughter also masks a lot in school so unsure what will happen.

Although school fully support us and believe she does have autism.

Hope your meeting goes well and you get some good strategies to try.

Also our referral was from the gp as that’s how it works where we live. We just had to show evidence of school support, so showed them the sen support plan.

Hi OP my daughter is 10 and she presents in a way more typical of girls. She hasn’t been diagnosed and has her ADOS on Wednesday - we went private. I’m a bit nervous as she masks well in school where she’s a model pupil and I don’t think her struggles are apparent to anyone except us (her family). I can let you know how it goes, she’s very good at hiding things and fitting in, so I’m hoping they see past that. For example she doesn’t stim much when we’re out but does it constantly at home. She has so many meltdowns but never at school etc etc. If she doesn’t have ASD and she isn’t diagnosed with it, that’s fine, but I am just hoping they see the real, unmasked her when they make their assessment. From what I’ve heard, I think a lot of assessment centres in the UK are good at seeing past the masking but hey we’ll see.

OP I have realised you have posted about the car situation previously, you really need to get a crelling harness ASAP.

Whether ASD assessments are undertaken by CAMHS or community neurodevelopment paediatricians depends on your area, but if you go private I would go to someone specialising in ASD assessments rather than a general paed. If you go private the HCP will want to do all of the autism assessment themselves.

An update:

My GP says a private referral letter holds no weight. She will 'try' a referral but expects it will bounce back. Referral has to be through school, so that looks to be the only avenue left for us. Our meeting with the school has been moved to next week. I have a call with the family worker tomorrow and will ask where we go from here.

In the meantime I'm looking at crelling harnesses (website isn't great so really not sure what to look for/ get).

Referral has to be through school

For an NHS multi disciplinary assessment, (Paed, Ed Psych, SLT and OT) I think they may mean that to refer to CAMHS or whoever they are outsourcing to because of the huge waitlist, they want two sources of observable different-to-peer behaviour before proceeding , home and school are often the usual ones.

However, it's commonly known by professionals and parents alike that in autism (and some other neurodiverse conditions but autism is the one most often discussed) many children mask at school and are seen as model pupils but they explode on leaving the school premises or arriving at home, whichever they feel able to do.

This vast behavioural difference between school and home is a massive red flag for neurodiversity to be the likely cause and for it to be investigated.

Some GPs and SENCOs are clueless, maybe it's time you asked them both why they don't see that behaviour the same way that any sensible person would

I don't have social media, BUT the advice from many posters in the SN section is along the lines of Do you have Facebook and if so could you look for autism support groups in your local area? They will be very much clued-up on the diagnostic pathway and what you need to do to access it, both via the NHS and privately that will be accepted by the NHS in your area.

Unfortunately, being fobbed-off happens to a lot of us, repeatedly in many cases, but it's essential not to accept that.

It can be a long fight, however with online resources nowadays, there's every chance of success, the only things you need to reinforce are your determination and your knowledge that your child is socially, behaviourally and sensory/emotionally different to their peers and needs support for that.

Which version of the crelling harness you get depends on your car.

Schools can often apply, but GPs can usually refer too. Don't be fobbed off.

Hi! You can do a parental referral. I did for my daughter. And I also did a parental request for an EHC assessment. Don’t let Gp’s fob you off. They all talk about early intervention being key but it’s not there unless you force it.

Self referral isn't possible in all CCGs.

You can also pay for a private assessment if funds are not an issue of course. I’m not sure about your area but waiting lists can be long. And that’s long even before Covid became an excuse for delays.

Cut off all labels from the inside of clothes, smooth long sleeve tshirt can help. Expect sensory difficulties to be worse when stressed, so when the seatbelt (or anything else) is stressing her out the clothes will feel worse. Reduce the stress and the clothes and seat belt will feel easier. Distraction as you get in car eg tablet, fidget toy, sensory sticks (awesome things) headphones chewing gum (sometimes helps not a safe bet).

Get a sand timer app on a phone or tablet, this or something similar. Set the timer for the length of the journey home (actually longer than the journey home in case of unexpected delays), explain that this is seatbelt time.

Do not ever give in on the seatbelt. Everytime you do you will make it harder next Crisis point. Make sure your next few car journeys (with sandtimer and bag of distractions) are to somewhere she really wants to go (even if that's home and you have to go out for a walk to get a lift hone).

If she spins hangs or bounces generally (and she probably will), make sure she has easy access to things that make this easier both inside and outside the house. So for example trampoline, swing, monkey bars, indoor doorway "chin up" bars, bilbo. If spinning works take the bilbo out and allow her to use it for 5-10mins before you get in the car.

@Lolly2803 we can't self refer unfortunately.

I contacted Lorna Wing Centre, which would cost £2900, but clearly they specialise in autism rather than diagnosis of other things. Our issue is that although we suspect ASD, it could be something else and then we've wasted a lot of money and are no further forward.

Where abouts are you? We had a private diagnosis for my son. It was I think £1,300. She was amazing and very helpful. I’d be happy to DM you her details if you would like.

We're in Peterborough and happy to consider options. Thanks @Lolly2803 that would be really helpful.

I've also joined local SEN boards on social media.

Ah we are quiet a way from you. The paediatrician would be in London or close to it.