[Help] Autism Assessment For a Child

[St Leonards Seagull]

For some context my 13 year old daughter has shown subtle autistic traits for a number of years which my wife and I did not act upon (yes we feel awful). Over the last few years she’s also had a heart condition which resulted in one particularly scary episode for her (2 years ago) and heart surgery last year. Since this she has steadily disengaged with the world, and we tried to get her counselling as she was anxious around her heart issues and she was referred to the local children’s mental health services (I live in Hull). They assessed her and told us they were unable to provide any further support as they felt she had autistic traits and she would need specialist support. Over the last year she has struggled with school and has displayed further traits. It appears that she has been masking her symptoms and a lot of previous difficulties she’s had and how she’s acted in the past make sense. Her school have strongly supported a referral for an assessment but the waiting list is long (a number of years I’m told) and I’m worried that she is not able to access counselling for her heart issue, for her and her schooling.

My wife and I appreciate that we should have acted sooner and we carry a lot of regret. We just need to access some support for her as a lot of local services want a confirmed diagnosis. I am aware that we can pay for a private assessment I wanted to know if anyone had any experience of this as I’m concerned about the validity of some providers and if they are recognised by schools etc. Any advice would be appreciated.

 

[Joey Jo Jo Jr. Shabadoo]

I had to go the private route with my youngest but his school wouldn’t recognise it, although they still put in some support for him. Eventually got an NHS diagnosis so we could kick the ball off for an EHCP etc.

I’d recommend speaking to your daughters SenCo for advice on if they’d accept a private diagnosis before spending out money, I fully appreciate that because of the long waiting times it could be very late in her schooling before you get an assessment. If the school support the referral then you should also be able to discuss strategies they can put in place in lieu of a diagnosis to help support your daughter as they obviously recognise she needs additional help. I know it doesn’t help with outside providers but again it might be worth talking to them to see if they accept a private diagnosis as well.

 

[Green Cross Code Man]

It's probably futile to say don't blame yourselves too much for past inaction but I will anyway. It is very challenging being a parent no matter the situation involved, difficulties always arise and of course the things you describe are very hard to live through. In my work in a primary school I have seen these situations play out many times and have observed that often parents can find it hard to see that there is anything amiss with their child. This is natural and for that you are blameless as most likely you have always made many small adjustments over time allowing for her behaviour and accommodating it as every parent does for every child. Her successful masking has added a separate layer of concealment for her condition which would have hindered objective judgement. Autism in girls is only now being taken more seriously, I think because girls seem to manifest it differently than boys on the whole, and usually show less challenging tendencies. It is not unusual for it to only be picked up later in primary school or early secondary as in your case. From the tone of your post, I would suggest that you and your wife care deeply for your daughter and are now trying to get what is best for her, you are good parents. With a bit of luck, you'll get the diagnosis and then things will definitely look more positive. Best wishes.

Edit: My wife has experience in her secondary school of parents successfully using this service for diagnosis after private assessment. They are based in Crowborough but say they work across the UK.

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[Weststander]

Please don’t blame yourselves, traits become more obvious over time, we know a case where it was first broadly diagnosed (is that the correct term) at 17, yet still not formally … an NHS waiting list of years.

If you can afford private, it’s expensive, I can pm you a specialist psychologist’s details, highly regarded by schools.

Are you thinking that the current school might not be suitable, it’s making her unhappy?

To get ‘the statement’ that means education authorities might fund independent schooling is a very lengthy process that could involve a specialist firm of solicitors.

Over time you may come to realise that being on the spectrum can also come strengths that could assist her academically. In a suitable/happy environment, she could thrive.

 

[Paulie Gualtieri]

We are going through something similar with our eldest (10 currently) He as well had masked his condition.

We’ve been told getting an Autism assessment won’t happen for at least 2 years. Timing wise this is awful as he is in the final year of primary school and we have to put in our preferences next week for secondary school and without a confirmed EHCP we can’t apply realistically for specialist SEN schools.

We have managed to arrange an AdHD assessment via the Right to Chose pathway in the next couple of weeks but will likely have to go private for an Autism assessment. I am currently looking into this now as the pricing is varied, also to your point on the acceptance of the assessment.

I will update where and when I can, good luck

 

[St Leonards Seagull]

Cheers for the replies, her school have been quite good so far and have implemented some support. It seems now that the local authority want to get involved as she’s only attending school for a couple of hours a day at most and when she’s in she’s not in normal lessons she’s with the special educational needs team. We thought we were making some progress as she didn’t attend school for around a month prior to the summer holidays we gradually started to get her into the school environment for a few hours, and now the local authority are pushing for more.
She’s not taken this well and has withdrawn over the last week. It appears the local authority are keen on a recognised diagnosis. We understand she needs to attend school and we are keen for her to go, but she gets so distressed it’s horrible. Ideally I’d like some mental health support for her as I believe that her heart issue has caused her anxiety and she doesn’t have any idea how to address it and that alongside any neurodiversity has led to her current issues.

 

[St Leonards Seagull]

If you can afford private, it’s expensive, I can pm you a specialist psychologist’s details, highly regarded by schools.

Are you thinking that the current school might not be suitable, it’s making her unhappy?

We are in Hull so I’m not sure it would be practical. But I appreciate the suggestion if you PM the details I could always travel back down for a bit.

Regarding the school we have no idea, she just won’t open up, she’s never been a talker. They seem supportive, she’s appears to have managed school previously by attaching herself to a single friend who has pretty much done all of her talking and interacting with others for her, she’s not been able to do this so easily at secondary so we think where it’s started to fall apart for her. She is horrified at the thought of any changes so I’m not sure if changing her school would help at this point.

 

[St Leonards Seagull]

We are going through something similar with our eldest (10 currently) He as well had masked his condition.

We’ve been told getting an Autism assessment won’t happen for at least 2 years. Timing wise this is awful as he is in the final year of primary school and we have to put in our preferences next week for secondary school and without a confirmed EHCP we can’t apply realistically for specialist SEN schools.

We have managed to arrange an AdHD assessment via the Right to Chose pathway in the next couple of weeks but will likely have to go private for an Autism assessment. I am currently looking into this now as the pricing is varied, also to your point on the acceptance of the assessment.

I will update where and when I can, good luck

Good luck mate, this parenting thing is bloody hard.

 

[Biscuit]

For some context my 13 year old daughter has shown subtle autistic traits for a number of years which my wife and I did not act upon (yes we feel awful). Over the last few years she’s also had a heart condition which resulted in one particularly scary episode for her (2 years ago) and heart surgery last year. Since this she has steadily disengaged with the world, and we tried to get her counselling as she was anxious around her heart issues and she was referred to the local children’s mental health services (I live in Hull). They assessed her and told us they were unable to provide any further support as they felt she had autistic traits and she would need specialist support. Over the last year she has struggled with school and has displayed further traits. It appears that she has been masking her symptoms and a lot of previous difficulties she’s had and how she’s acted in the past make sense. Her school have strongly supported a referral for an assessment but the waiting list is long (a number of years I’m told) and I’m worried that she is not able to access counselling for her heart issue, for her and her schooling.

My wife and I appreciate that we should have acted sooner and we carry a lot of regret. We just need to access some support for her as a lot of local services want a confirmed diagnosis. I am aware that we can pay for a private assessment I wanted to know if anyone had any experience of this as I’m concerned about the validity of some providers and if they are recognised by schools etc. Any advice would be appreciated.

I totally get how tough this must be, especially for your daughter. Being 13 is hard enough as it is, let alone with everything she’s been through - the heart issues, anxiety, and masking her autistic traits. No wonder she’s feeling disengaged.

First off, don’t beat yourself up too much—hindsight is 20/20, and it’s clear you're doing everything you can now to get your daughter the support she needs.

My youngest had an early diagnosis and an EHCP which has been a gamechanger, so I can really appreciate the difference getting the right support can make. There’s a great charity down in Sussex called Amaze, which helps parents and young people with autism and other additional needs. Maybe see if there's anything similar in Hull? Sometimes local charities or support groups can be a real lifeline, and they might know about private assessment providers that are recognised by schools too.

I've never gone down the private route, but given your daughters age and everything she's dealing with, cutting the waiting list sounds sensible.