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.

@VacMan

I'd try and get a low interest loan or add it to my mortgage, I'd try to raise the money in other ways. Sell stuff on eBay.

I'd bend over backwards to get the money myself, I just couldn't ask other people to fund it.
My child, my responsibility.

That's what I think.

You can ask family if they will donate a bit to your fund.

In the meantime, keep pushing for a FREE diagnosis and look into any places (good reliable ones), that have a payment plan.

Best of luck.

I think sadly you will need an NHS diagnosis to be able to accept real help although a private diagnosis could be useful for you in terms of knowledge and may provide some weight to access an NHS diagnosis. I don't know whereabouts in the country you are but action for aspergers are fab ( don't be put off by name they work with the full asd spectrum) and their assessments are only £250. It would not hold weight legally but could be used as evidence to get on NHS wait list.

Almost forgot. It appears Caudwells charity also offer assessments (for free- but they take into account parental income)...
not sure if it's for Autism but you can check there OP.

OP, please go through social services to get additional respite services. Some local authorities give you a budget you can spend. Try and avoid using the DLA.

Here is a place that does it for £1,000 and has a payment plan. I don't know them, it's up to you to look into individual credentials, etc.

psymplicity.com/clinic/

you asked about LD services. There is no such thing. Support for children with severe LDs usually happens via extra support on school. There is nothing outside.

Have you considered a special school for your DS? This might meet his needs better than patchy 1:1 mainstream support.

Thanks for the information about Caudwells - can’t believe they never came up in all my searches the website it a bit tricky to navigate from a phone but I think their MDT assessment would be more like £940 as we would qualify for funding. They seem a much more professional organisation too and might be taken more seriously.
Like many have said though I’m not sure anything will change even with a diagnosis.

The excerpt from the ed psych's report isn't a good report but it is a typical LA ed psych report which fundamentally sets out to ensure that provision is neither specified or quantified according to needs rather provision is put in the hands of schools without the training or funding necessary to make it work. You need to be getting the EHCP reviewed with support of IPSEA or SOSSEN. I'd invest in independent ed psych, SALT and OT assessments tbh.

Do the LA accept private Ed Psyc reports?

Was he referred to Learning Disability CAMHS?
Has he had any testing for any other conditions (e.g. genetic testing/MRIs)
What does the ed psych day about further referrals?

In my experience (as a teacher and senco), diagnoses do not help young children or their families much

We have found the complete opposite of this. We fought very hard for every scrap of support for ds, who has very complex needs. We have had many struggles with school and their attitude towards us as parents. This only started to change when ds received a diagnosis of a rare genetic condition at the age of of 8.

good point about genetic testing too. Was this ever discussed? It may not bring help about but it could potentially explain why DS is as he is.

squirrelnut
That sounds vague from the EP.
However the EHCP should be needs driven and deal with the 'how'.

Definitely push for the EHCP to be reviewed and clarified. When was your child's last SEN review? When is the next one due?

Hiya, I have a son with asd and I can sympathise. If you think people will donate then go for it. But the downside, often private asd diagnoses aren't accepted by the nhs and in schools etc.

This is a prime example of the lack support and services for many children's and parents but they are so over stretched. Good luck.

If you end up at SENDIST which you very often have to do to get an EHCP that is legally enforceable with sufficient funding then SENDIST accept private reports.
Our LA ed psych (head of service because I'm known to be difficult) decided that all dd needed was a £30ph art therapist once a week. With support from an independent ed psych dd was placed in independent specialist school that costs LA over £2k each week. That's the difference I think. Likewise LA ed psych report was four pages whereas independent ed psych report was 40 pages there was no comparison.

I'm not sure @squirrelnut what you want to achieve? Even if your son is assessed and given a label(s) he is still surely going to go to a state primary school? Unless you want him in a special school?

There is no help privately outside of school.

There are tutors, who can help with his literacy and numeracy and who are trained in working with ASD pupils, but you would pay for that and it would be after school. You might get speech therapy on the NHS.

Have you thought of what lies ahead beyond an assessment?

It's up to his school to provide for his needs. They must come up with an IEP once they have admitted he has difficulties. what does his say?

@squirrelnut

Do the LA accept private Ed Psyc reports?

It was a private Ed psych report used for DS ehcp. She came in when he was in year 1 and did a very comprehensive report which really helped. He is year 6 now so the school are planning on getting the same woman in again soon as it’s allowed to help get things right for secondary education

My feeling is that if you’re going to spend a large sum of money - with or without a crowdfunder - that money would be much better spent on a good private EP who would give your DS a really thorough assessment and provide a really in-depth report for you to take to your LA and the school and get his EHCP transformed. In my opinion, for what it’s worth, you are more likely to be able to access additional/more appropriate support (particularly at school) with a solid private EP report than by chasing an ASD diagnosis.

I don't think my DS has anything like the needs that your DS has, but his diagnosis was just under £1000 which with a DLA at a bit lower than yours (and approx one evening a month out funded through DLA/a carer, as our respite) we were able to save it up for that.
Because he has a diagnosis of ADHD and we needed the diagnosis for meds (which have made a difference) it was worth it for us.

We have had various teachers tell us we should get an assessment for ASD as well but we are not going to spend money on that. He already has SALT involvement, and OT, and help at school. We wouldn't get anything different or more from an ASD diagnosis. I don't think he closely enough fits the criteria to get a diagnosis now (and I know that some children don't get a diagnosis till teenage years).

My DC suffered a huge amount of in utero trauma and has no issues at all. DC had none when pregnant and yet has a DC with multiple difficulties. It's just one of those things.

Genetic test was done and didn’t come back with anything so presume normal.

They did mention MRI a while back but no appointment yet though the genetic testing blood test was quite traumatic for him so I wonder if they decided to leave it a while.

Lockdown has delayed things as well which is understandable.

If you do a GoFundMe please don’t expect adults with disabilities to donate to it or promote it just because they “know what it’s like”. Especially if you don’t know them.

There is a surgery for kids with my disability (that didn’t exist when I was a kid) that up until recently no one could have on the NHS. Now they do it in certain circumstances. I sometimes post on twitter about living with the disability and at one point got loads of strangers sending me GoFundMe links for the surgery to share, then getting annoyed when I said no.

Paris that must be very hard. No, I would never do that and on balance I won’t be starting a page and this thread has helped me examine a lot of things and learn new things too.

drsprouse if you believe your son has ASD. I will get a diagnosis. Especially if it's for ASD. A diagnosis of ADHD would not explain social functioning, sensory ( though this is disputed), rigidity of thought ( if your child displays this).

Although a diagnosis doesn't to amount as much incase for specific reasons. I think it's important for a child's identity... to know that their problems are not down to being difficult, stubborn.. but they actually have a condition which makes some of all aspects of life challenging and to know that they are like minded individuals like them.

Bupkis
In my experience (as a teacher and senco), diagnoses do not help young children or their families much

We have found the complete opposite of this. We fought very hard for every scrap of support for ds, who has very complex needs. We have had many struggles with school and their attitude towards us as parents. This only started to change when ds received a diagnosis of a rare genetic condition at the age of of 8.

The important words here are "rare" and "genetic." this makes it both more 'provable' but most importantly 'low incidence.' (ASD was moved from low incidence to high incidence some years back)

When a child with a low incidence condition turns up, generally no one cares who diagnosed them, because a whole load more children wont suddenly also show up behind them, so it's rare to have the diagnosis challenged or down played. Plus if it's rare and genetic, few education based professionals want to argue with the parents.

If it's a high incidence condition, schools and LA's often have long queues and low budgets for help, (often accompanied by mutterings about 'everyone wanting a diagnosis' etc) and that's when you do start getting sharp elbowed parents (sometimes rightly) jumping the resources queue with private diagnosis and consequently many schools and LA's will both dispute and not accept them.

I absolutely agree with those saying in OP's situation, put any money into an EP and getting a really good needs based EHCP where every needs target has a time based route to how and by when, and by whom, will this be achieved, as a priority rather than seeing diagnosis as the way to get needs met, (it rarely does on it's own) but do get back in the diagnosis queue.

@squirrelnut

Early trauma? They're trying to fob you off with the attachment disorder rubbish that they spout at parents in order to get rid of them. It's gaslighting and a very old trick.

I was exactly in your position around 15 years ago with camhs, I borrowed money for a private assessment and they wouldn't accept it anyway. Ds1 never did get any help. It was a terrible time.

Unless you have a disability lawyer to help fight your corner, they won't accept a private diagnosis. It's a futile exercise and a waste of money. I've had to pay all over again to have him assessed as an adult and he's finally on treatment now at the age of 22.