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.

I think you need to seek help and support for your own MH issues if you haven’t already done so.
Do you have a partner? Can one or other of you take holiday?
If you’re getting £250 allowance you could soon save a long way towards the assessment if you cut respite for a couple of months.
I wouldn’t. I know you’re struggling. But I would avail myself of everything the NHS has to offer first. It could be they won’t assess because they don’t think that’s the issue. Have they said why they won’t?
Plus how would a diagnosis help you in your day to day life? Worth finding out before you spend money.
Good luck OP.

With kindness, I do wonder if you’re pinning all your hopes on a diagnosis but it may not actually change anything. That said, I fully appreciate why you want one but I wonder if you’d be better off focusing your energy on accessing better support wiry school, children’s services and pushing for better support from CAMHS. I’m not criticising at all, I just wonder if - given his age - you’d be better off using your resources to ensure he gets his needs met as it’ll all be needs-led as opposed to diagnosis-led.

@squirrelnut

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?!)

I would push to get this right. For us more than anything getting the right EHCP and provision in school has made a massive difference.

We where told because DS was so complex we were lucky to get his diagnosis at 7 for the autism even though it was obvious to everyone.

Hmm I’m quite glad I posted now as perhaps I need more courage to go back to GP / CAMHS rather than try to circumvent them.

School is a problem - we have a good EHCP (at least I think it’s good but have not seen another one!) but they claim they don’t have the money to fund what’s written in it so it’s all a bit rubbish. They don’t even seem to be able to provide me with a visual timetable but it’s early days.

@squirrelnut I'm not sure whereabouts in the country you are but if there is an ehcp the school must provide what is written in there as it is a legal document

Have you got a named SEN Officer? Or if not maybe worth contacting the general SEN team and asking for advice on this as it's positive to hear that the Ehcp is good, but it sounds like the school need some guidance

Sorry just seen you have an ehcp.

Tbh, I'm not sure an autism diagnosis will get you much else. There's actually not much support out there. A diagnosis is not a magic key to acsess help. I know a mum who had to move back to Eastern Europe for treatment even with a diagnosis because they're just isn't support and help for her kids here.
My son is profoundly disabled and diagnosed but we get very little help. The only help we do really get now is from his special school which we acsessed with an ehcp. All other help we get is practical help for me through social services.

We have always been told the nhs don't treat a diagnosis they treat symptoms. If I were you I would deside what he most needs help with and ask the doctors for help with those specific things. Look what specialist deals with his behaviours and get a referral. Don't worry so much about the lable, it rarely changes things.

he may be too young for camhs.
school need to request an ehcp, if it is a diagnosis you want

oops,
so you have an ehcp. surely that is half the battle?

Strawberry I have written to the school with my concerns (no reply as yet - I know they are busy at the moment) and also the LA. I’m not sure why he’s even in a mainstream school to be honest but there is a big lack of specialist provision here and often get told “no school for children like DS” which makes my blood boil.

I have diagnosed chronic MH issues myself but again no services offered - was given diagnosis and discharged on the same day. I have attempted to peruse this with my GP who is very kind but then Covid happened. Maybe need to pick this up again. I do manage day to day, it’s just very exhausting.

@squirrelnut

Hmm I’m quite glad I posted now as perhaps I need more courage to go back to GP / CAMHS rather than try to circumvent them.

School is a problem - we have a good EHCP (at least I think it’s good but have not seen another one!) but they claim they don’t have the money to fund what’s written in it so it’s all a bit rubbish. They don’t even seem to be able to provide me with a visual timetable but it’s early days.

If something is stated in the ehc then they are legally obliged to provide it. Beware many plans will have wooly terminology like “should be provided with a high level of support” or “visual aids should be considered” which sadly means nothing because it’s not enforceable.

Firstly I'd like to just say that I'm very sorry to hear about your abusive relationship & what you went through, including DS's conception 🌷

Please don't take some of the posts to heart. Some people have the emotional intelligence of concrete!

Along with others, I'm not sure a private assessment is going to help you. It really does depend on your area etc.

I think as others have said you'd be better pushing for the help you can get through school.

However, if you really think it can help then there's nothing wrong with setting up a 'Go Fund Me' page, people do it for FAR less important things!

The truck though is finding someone who can help you get it out there, because people can only donate if they know about it.

Best of luck for you & all your kids going forward 🌷

Tomatoes the EHCP doesn’t appear to be worth the paper it’s printed on - but I have zero experience of them. The school tell me it doesn’t have enough money attached for full time 1:1 and so only bits here and there so I have no idea how they will adhere to the plan without this
Sorry to get off original topic.
I think those who are saying a diagnosis won’t help are probably correct and I’m clutching at straws! (Sorry!)

look after yourself op,
find support for your MH issues
and this thread looks useful

Could you take a sideways route into CAMHS? It would be worth contacting the school nursing team and asking them for their input. They can speak to you about your concerns and observe him in school, they can then complete the preliminary reports and make a referral to CAMHS using those reports as evidence that he needs to be assessed. The system is absolutely shit but in terms of appointments and supports, the squeaky wheel gets the grease. Be a squeaky wheel.

good to get things off your chest op

Op call contact a family and IPSEA and see if there is anything you can do to speed up dx / get more help

As pp have said private dx may not be accepted unfortunately

@squirrelnut Got it. Absolutely understand and I’m so sorry you went through that. Good luck with your son - you do all you can to help him and don’t be proud to ask people to help financially. Any decent person should want to help.

I have an autistic son and there’s an awful lot you can do yourself at home to help him - I’m afraid it can be a real struggle to get help from the LA. Give him as much intensive interaction as you can - you can Google techniques or look up books like More Than Words by Hanen.

All the best, it sounds like you are having a very tough time.

@squirrelnut

Tomatoes the EHCP doesn’t appear to be worth the paper it’s printed on - but I have zero experience of them. The school tell me it doesn’t have enough money attached for full time 1:1 and so only bits here and there so I have no idea how they will adhere to the plan without this Sorry to get off original topic. I think those who are saying a diagnosis won’t help are probably correct and I’m clutching at straws! (Sorry!)

Unless the plan says “mini squirrel will require 35 hours a week 1-1” or similar then it’s very much down to the schools discretion .

If he isn’t coping then contact the LA about an early review

Another thought - you might be able to get some funding from The Cauldwell Trust.

I'm not an expert in this area but it sounds like you need to take a different approach and the advice in this thread might help.

I just wanted to say, I know when things are hard that it feels impossible to dig deep and have to put even more effort into getting the situation to improve. So really I am just adding a bit of moral support. You are not alone and you will get your DS the support he needs (and for you as a family). Keep going

So sorry to hear what you went through. Just to be clear I wasn't doubting that there was trauma, just wondering whether professionals recognised in utero trauma as a credible theory or if they were sceptical.

I think what's really important is for you to have tangible goals and expectations of what you want for him. What will a diagnosis give you? Validation or will it provide real practical help? Focus on the latter

is he on an nhs waiting list with a paediatrician?

OP, trauma can present in a very similar way to ASD/other LDs and you have already said that you suspect developmental trauma. The treatment and prognosis for each is completely different. A child can completely recover from developmental trauma with the right help (this doesn't apply to autism and some other LDs) - and incidentally yes, parenting and attachment are relevant, there are methods and therapeutic work which can drastically and quickly help recovery from developmental trauma. If you have looked at beacon house you will have seen their video about recovery from developmental trauma? If not I can link.

In relation to "parenting" it isn't so much you are a bad parent, it is more that what you are doing with this particular child may need to change.

I think you are right to go to go the GP route now, and you are also possibly thinking about the wrong thing here - but either way a solution will be expensive and /or require a lot of your time. And so go fund me might well help if you do get the money.

In summary, the treatment for ASD or other disorders and developmental trauma is completely different, with the right treatment for dev trauma you are looking at recovery. IME successful recovery involves a lot of your time input, you doing 1:1 therapeutic work such as long walks, sensory work but there could be quick responses with the right therapy and normality for your child and family, whereas for ASD you may be looking at special schools and once you go down that line you are looking at a life time of your child needing external supports.

My dc had developmental trauma and the recovery and difference over a period of a couple years were amazing once I started doing the rights things. At 3 the prognosis was that dc had severe LD and autism and would need a special school for the rest of his childhood, but this was incorrect - with a lot of therapeutic work within 2 years he was in a normal school and things improved year on year and he is now doing well in every respect, academically ahead in some areas.

Would an assessment for dev trauma/other be 2000 with beacon house?

If you go to "go fund me" with an actual diagnosis from beacon house and an idea of how much their therapeutic input would be, then you may be more successful?

I think you are right to go to your GP, these are just more things to think about.

If attachment and trauma are an issue then I hate to say it but weekly respite may well be contributing to the problems - in my experience.

Is section F of the EHCP is detailed, specific and quantified? If it is what is written in there must be provided, and if it is not you can hold the LA, who are the ones legally responsible for ensuring the provision is provided, to account via Judicial Review. Funding shouldn't be your concern, if the school need more they should approach the LA. If the EHCP isn't specific and quantified try to focus on making it tighter.

You can ask for a carer's assessment on social care and an assessment for DS by the disabled children's team.

If DS is needing 1:1 throughout the day and night then re look at the care component of DLA as well as the mobility.

Have a look at somewhere like GOSH, who have a team that specialise in assessing DC with trauma and attachment problems but can also assess for ASD, ADHD etc.

Fr0thandBubble Thank you for sharing the Hanan approach book - Just did a quick google and it looks really good I am going to try to order. Never heard of it before