AIBU to start a Go Fund Me page for a private diagnosis for DS?

[squirrelnut]

I’m feeling really low at the moment so possibly not the best time to post in AIBU but I need honest opinions!

I want to start a go fund me page to raise money for my DS (5) to pay for a private ASD assessment. It’s £2000 which is more than we could ever afford.

I’ve been battling with the NHS since he was 9 months old. He has a very complex history of trauma whilst I was carrying him and I also have mental health problems so the stick tends to get pointed at me and it’s either poor parenting or attachment issues (for which zero support or understanding is available). I have 3 older children who have no similar issues.

DS currently has no proper diagnosis other than development delay which is preventing us from accessing the right support for him. I don’t think he fits neatly in one box and so we really need professional help and someone who takes the time to conduct a thorough assessment of his needs.

CAMHS have been terrible and for years refused the referral and the one time they did accept, I had a meeting with them (without DS) and they promptly discharged him!

So tell me AIBU to start a go fund me page as it feels an uncomfortable thing to do.

Hundreds of people have to save/ borrow to pay for private care. It’s your responsibility no one else’s. No! It should be covered by the NHS, plenty of far less important things are and we all pay via taxes. I pay for a lot of other people’s lives. I don’t mind if those most in need are taken care of. Autistic families are not. Don’t donate if you don’t want to but I’m sick of the ‘it’s your responsibility’ bullshit. How lacking in empathy can you get?!

I think it'd be worth you shopping around, as I'm sure you could get it cheaper than that. you can but they’re often not psychiatrists and you need a good clinic to have schools accept the diagnosis. It also depends where you live. In London that’s what it cost

I’m a GP. Sorry about what you’re going thru, I agree that CAMHS can be very lacking unfortunately. I just wanted to second what a PP said, in my area a private diagnosis isn’t recognised by schools or other support services so just be aware that all that money may still not get the help you need.

He has a very complex history of trauma whilst I was carrying him

This is quite confusing without more detail. I'm not an expert but generally do medical professionals take an opinion like this seriously?

Just be aware that a diagnosis might not be the life changing event that you think it will be. Unless he has severe enough needs to warrant an EHCP, the school will not be able to access much in the way of extra support for him - and even then, they might only get such minimal funding that it only just covers a bit of ‘boosting’ in a group with a TA.

I’m not being negative or dismissive, but this is the way it is. Schools have to fund the first chunk of money spent on any child with additional needs, so in the current climate they are really, really struggling to support parents and children as they would like to.

vinoelle Interesting thank you - what a gamble - I did speak to another mum at a support group who has used this particular place for a diagnosis and it was accepted but who knows. Website mentions they meet the NICE guidelines for diagnosis does that make a difference?

Our private assessment was accepted by our school as are many others I’m aware of. I’d recommend an autism support group and maybe ask your school first as well. A diagnosis can also just be to help you understand and look for resources if you don’t get help from your LA

@formerbabe

He has a very complex history of trauma whilst I was carrying him

This is quite confusing without more detail. I'm not an expert but generally do medical professionals take an opinion like this seriously?

The child's experience before birth is increasingly being recognised as a part of the puzzle yes, most decent professionals when taking a history will start by asking about the pregnancy.

Is that what you meant?

uglyface he already has an EHCP but provision is very patchy and the progress is so disjointed I feel he needs someone to have a bit of an overview of that makes sense?
Right now we have various labels from different professionals eg. Ed Psyc has written severe LD but we have no contact with LD services (are there any services?!)

@squirrelnut

TexDrip sorry to be clear I considered that way before I knew he had additional needs - not because of them. I considered it because of the way in which he was conceived and the fact that I had too much on my plate and that I wouldn’t have chosen to have another child. I did not do this however and I was just responding to a poster who asked why I had 4 children.

You don't need to apologise or explain yourself to that poster OP.

If you are honest about why you are raising money then people can either choose to donate or not, so it wouldn't be wrong.

I wouldn't be sure that a diagnosis made privately would help you get any extra support, so I would think carefully about what benefits a private diagnosis would actually bring you all.

I don’t see the harm, create it, if people want to donate they will, if they don’t they won’t.

Do you have social services help. If you're not coping with him full time social services should be funding respite or even a carer for him. You shouldn't have to fund respite out of dla.

My worry with a private diagnosis will be it won't hold any weight with the nhs and school services. What you'll most likely need is an ehcp. A private diagnosis won't get you one. You need nhs workers and teachers to support your application. The nhs are unlikely to fund therepy based on a private diagnosis as well. So unless you can fund all his treatment and support privately a private diagnosis will probably not be worth the paper it's printed on.

I'm not sure what advice to give you other than keep fighting the nhs. Keep a diary of behaviour and get it written down to give to Dr's so you can get you're points across clearly and get social services envolved so that you are getting acsess to all the help you are eligible for.

My only other question is, you said you think he has developmental trauma from when you were carrying him. I thought you meant when you were pregnant - but that link refers to trauma that happened directly to the child effecting their development. Am I missing somthing here.

Op sounds as though you have a loton your plate, and I hope that some of the info on this thread is useful to you.

Also remember that you need to be as well as you can be in order to best look after your child. I have the feeling that you are very close to burnout.

Really hope that things improve for you soon whatever you decide to do.

However you find it, I think it's important to understand what you intend to achieve by getting a diagnosis.

In my experience (as a teacher and senco), diagnoses do not help young children or their families much. I know that this does change as children get older, as diagnoses can be very useful for people entering college or the workplace. What is useful for most parents and children is practical support - diagnoses rarely open the door to more support.

If there is something that the diagnosis will allow you to access, then it may be useful. But be aware that a diagnosis isn't helpful in itself. In some areas, an autism diagnosis actually make sit more difficult to access CAMHS, sadly.

I definitely wouldn't recommend swapping respite for saving towards a diagnosis.

@squirrelnut
I don't mean to dismiss the poor treatment that your ds may have received from CHAMS but you do understand that it is very difficult to diagnose ASD in children of 4 years and younger because many of the diagnostic criteria at that age can also point to many other diagnosis. Also if there's a co-morbidaty such as ADHD you won't be able to get an ASD diagnosis until the ADHD is properly treated. Basically the more complex the child's needs the more difficult to diagnose.
I know that this isn't what you want to hear but your best course of action is to get the school onside and have them push for an assessment, this is doubly important as the school should be heavily involved in the diagnostic process.

formerbabe the trauma encompasses sexual assault, physical and psychological abuse and mental illness (as a result) all of which are said to have affected DS.
It’s very difficult to separate all these issues and pop him in a box but I feel unpicking things will help us all to help him.

There are so many issues here and that's just around funding the care.

No, the NHS doesn't have sufficient resources to meet every need. However neither are the resources it does have managed, used and allocated well. It was set up to deal with diseases on the basis that once those diseases were treated the drip of new issues would cease but they were the rip of the iceberg.

If we want more from a universal service, we have to pay for it. It can be paid for either by privatizing the nhs in whole or in part or by providing more money and resources to keep it wholly universal but the British people repeatedly vote for taxes not to rise.

OP in relation to CAMHS go back to your GP and ask to be referred again, quote new evidence. I would also go and see your MP. Whilst I can accept CAMHS is under resourcesd it is so due to commissioning decisions at CCG level and a lack of monitoring and performance management of co tracts by the commissioners. It is regrettably a badly managed service built, in my experience, on a culture of excuses and is dependent on nurses sharing relevant information upwards. Information often incorrectly recorded or not fully understood due to competence and poor listening.

If you engage again you have to record every conversation, initiative etc, back to them in writing. Once they are aware you are maintaining your own audit trail they work with a little more attention and caution.

Good luck. Your local health watch may be able to advise or help you with advocacy.

@Christmasinjune

Yes exactly what I meant.

I'm not an expert or in the medical profession, but I was wondering how much credibility these theories are given, or if they hear such claims from a parent, do they do an inner eye roll ?

My first instinct was YABU, because I know many many people who have waited years for assessments and many others who have been failed by CAHMS in many areas. The whole mental health system, especially for children, is woefully underfunded and unfit for purpose. So I thought "why should OP jump the queue by basically begging?"

But then I thought "why not?" It might be the only way you'll get an assessment. People crowdfund stuff like holidays, weddings and all sorts of CFery, so a medical assessment isn't over the top, and nobody has to contribute. You might need a thick skin, as lots of people will react like I did at first, and worse. But the peace of mind you'll get from a yes/no diagnosis might be worth it.

But, bear in mind that (a) he may not be autistic, and (b) if he is, you might still struggle to get any NHS or local authority help, even with a diagnosis. Check out the Special Needs boards - there are plenty of stories from people whose private diagnoses have not been accepted by LAs, even when it's been done by the same person who would have done the NHS assessment. Even so, you might feel it gives you more of a basis to argue your case than no diagnosis, and it might help you when you feel that people are blaming you.

I think that this money may be the thin end of the wedge in what sounds like will be an incredibly expensive process - especially if a private assessment is unlikely to be recognized in a clinical sense. You can't really make a 'Hail Mary' play until much later in the game, IMO.

What do school think ? How old is he? Attachment disorders and ASD can sometimes present in a similar way.

Personally I wouldn't start a go fund me page but it's your call. I'd start saving or try a loan/credit card. The diagnosis itself sadly probably won't change anything for you or him.

Most private ASD clinics won't spend time unpicking all of the issues, they will just do what they have been asked for (ie- an ASD assessment, they may make further referrals but if private this will be at your own cost again unfortunately)

If he has an EHCP and you don't feel the assessment was thorough or the document reflects his needs you can ask for a reassessment or up to date assessment. When is the annual review? You can discuss this with the school and find out whether they feel information is lacking and they should be able to support with this

Have you had a carers assessment from social services? That may be a better way to get the support you are looking for and needing. At 4 he is young yet, which may be why you are finding resistance to an ASD assessment, in a year or two you may find you can get it, but that shouldn’t stop you getting the practical support you need in the meantime and that’s where SS should come in.

Action for Carers May also be of help to you here

Your childs school can make a referral. Have a chat with the SENCo and explain the difficulties you are experiencing. They will need to gather evidence to support the referral, so it will take a couple of months, but at least it will be free.

I would also suggest you ask for an Early Help Assessment. The assessment will open up options for gaining support. For example you may be offered the chance to use 'Team Around the Family/Child'. With this all the professionals involved with your child will meet with you and discuss your childs needs and how to help the family as a whole. In these meetings you can request a referral be made and explain how it would help. It will then be discussed and if decided it is beneficial to the family the referral must be made.

You can start a GoFundMe page for whatever you want. People don’t have to donate. YANBU and I hope you get the answers you need very soon