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.

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.

social services are a pretty nasty bunch who will only help when shit hits fan. I try to hold down a job whilst parenting a low functioning teen (lone parent). I am really ill with stress. Carers assessment refused. I have been told by the local MASH team that I either should give up work if I need a break (because my bills pay themselves) or use DLA (which I cannot afford either as I had the half the hours I work and need DLA to pay the day to day living costs). Social services are really not worth the bother. Just extra stress. I would avoid them as no help will come that way.

daisyfairies mainstream school with a bit of 1:1 and middle rate DLA - I should appeal for higher rate as DS has night time needs but I was afraid of getting the whole award taken away.
SALT from a local charity when he was 3 (subsidised rate) followed by a few sessions from the NHS but not anymore.
Respite I use the DLA money as have other DC to try and think about and use the time to take them to swimming, park, have friends over etc as can’t do any of this with DS4.

Has he been assessed by an educational psychologist?

Is the developmental delay around his motor skills (gross and fine), or emotional development, or educational learning/ development?

I am sorry to hear of the trauma you suffered, but it is unlikely to have affected him directly while you were pregnant. Not in the way you seem to suggest.

People are free to contribute or not. If you were my friend I would contribute. Don't let pride put you in debt, if you don't need to. Sorry you're in this position

Where is the assessment centre OP? Link?

Who has already assessed developmental delay and what does that mean day to day for him?

OP, does he have an EHCP and if not, do you think he needs more support in school?
If so, I would focus on that and push for Cahms at the same time.

But honestly, you get DLA, school support and salt. There isn't more you could possibly get on the NHS. A private dx will in all likelihood not open doors to more therapy. What the NHS has to offer is really dreadful. Unless you can afford then private therapy too, I would not bother.

Can you say what you hope that gain from a private diagnosis? Still not clear to me.

I'm not clear that the child's issues are and I'd genuinely like to know, having been a professional in this area for years.

Is he behind with reading? Numeracy? Socialising? Physical development? How were these assessed and when?

I don’t think you’re unreasonable to start one but due to my job, I see a lot of these; and generally you won’t get much from strangers - you’ll mostly raise money from friends and family unless you can find a news angle. If you can encourage friends and family to donate and then share, you stand more chance of getting donations from their friends too, but that’s a big ask and not one that everyone is comfortable with.

I don’t say this to demotivate you or tell you not to do it, it’s worth a go, but the vast, vast majority of petitions never get any donations from strangers and don’t meet their goals, despite the stupid ones that get funded and then covered in the media. I wouldn’t rely on it, but have it as part of your arsenal if it’d help.

Poppadumpony I already claim disability living allowance middle rate. I think you might be right about not being able to diagnose due to the complexities. That’s something I have also thought myself in the past especially given the overlap between attachment and autism.
I don’t really care about a label for DS but school in particular seem to want everything to be black and white which it is definitely not.

I think I find it very hard to explain DS’s issues without referring to my past trauma (which I hate) and so maybe that’s why I wanted the ASD label? Maybe I should use the LD label the Ed Psch gave...

But honestly, you get DLA, school support and salt. There isn't more you could possibly get on the NHS. A private dx will in all likelihood not open doors to more therapy. What the NHS has to offer is really dreadful. Unless you can afford then private therapy too, I would not bother.

That’s also put much better than I could have.

JinglingHellsBells
You can google it, I can assure you £2,000 isn’t crazy as it’s close to what we were charged. Most require a 4 week period for the child and parents to have multiple appointments, depending. We had an initial, do you meet the criteria for further investigation appointment, with a psychiatrist. They then gave a report, which cost, that stated what traits indicated a strong enough possibility to make the assessment worthwhile. Then the assessment began, a few sessions with a psychologist from the same clinic with us the parents, one was 4 hours long, and then the assessment with the psychiatrist for our child spanning 3 sessions. Then a full report which included the diagnosis for ASD and other things they raised. It was very comprehensive, difficult, but I think the money was a reflection of the time they took with us.

JinglingHellsBells here it is: theowltherapycentre.co.uk/

Chosen purely because the only other parent who gained a private diagnosis used this service and due to location.

Can you say what you hope that gain from a private diagnosis?

Just my opinion from personal experience, it helps both parents and child to understand why they behave or see things differently to others and answers a lot of questions. We didn’t get anything more from our school, they were quite mean in a way... but it helped our child enormously to know she wasn’t difficult or naughty or stupid... I really think understanding yourself is important and you can’t if you haven’t been diagnosed- or had it ruled out even. Our child became much happier as she understood herself better.

squirrelnut just so you know, a lot of schools etc do not accept a diagnosis if it’s not from a psychiatrist. That place has none from what I can see, just loads of different ‘therapists’. I would look elsewhere personally.

JinglingHellsBells he’s too complex to go through everything but day to day issues:

Toileting issues
Dressing & Bathing - huge issue very resistant
Eating - limited diet (Self restricted) , eats with hands so mainly finger food, working on spoon at the moment
No literacy skills - Eg cannot recognise own name
Working on numbers 1-10 (verbally not written)
Socialising - does not interact with others - very solitary
Play - little imagination, doesn’t play with toys as such other than Lego, very poor eye contact
Physically - Slow to walk but can walk ok now but no sense of danger and often refuses to walk / Runs and hides. Likes to climb and no awareness of safety etc.
Walks on tip toes (not all the time)
Challenging behaviour - screaming, kicking, hitting, biting, spitting when challenged by children or adults eg.
Child trying to share something, adult enforcing boundaries
Excluded from 3 mainstream preschool settings prior to starting current placement, same behaviours as above.
Poor sleep - wakes frequently - high anxiety- spoiled sheets etc .
Very sensitive to noise eg. Rain on window at night, busy places
Very literal interpretations - not sure sometimes just due to lack of understanding - needs 2/3 key word instructions rather than long sentences.

YANBU, I'm doing one for my dd to study in America.
People will either give or not.
You do the best for your kids, and if this is what it takes you shouldn't care what others think.
Good luck. x

sounds very complex and not dissimilar to my DD who was later diagnosed with autism and severe learning difficulties.

Under what kind of pathway are you the moment? Are you seeing some kind of paediatrician at the hospital or have they completely discharged you?

How and when - community paediatrics in clinic, SALT in clinics and nursery / Home visits and OT did a home visit too. GP we have seen at the surgery and history from me.
CAMHS was at a clinic but only me, not DS was present. Reports from various preschool settings and also the area SENCO was quite involved for a while.

DS currently has no proper diagnosis other than development delay which is preventing us from accessing the right support for him.

what kind of support do you think he needs which you are not getting currently?

are the community paeds on a wait and see approach? Is there a plan to maybe assess him further in the future?

Echoing upthread...a diagnosis will not get you anymore help from education or the nhs. At best we treat the observed needs of the child, so the label isn't important. So if dc have delayed language that will (may depending on resources) be worked on. Very little a diagnosis will add to that. Sorry. I think you need to be realistic about what you hope a diagnosis is likely to achieve. A huge percentage of people with ld have autism (or elements thereof) but the service they recieve is based on need not diagnosis in all cases.

Has he had an educational psychologist assessment?
If you push for school to request that then that might help diagnosis wise.
Developmental trauma is one of the most undiagnosed, complex conditions I’ve experienced. As previously stated it overlaps in such a broad way with a number of other things.
The idea of a gofundme page is kind of okay in theory but 8 would be concerned about the sensitivity of your child’s experiences. Making the needs and experiences of a vulnerable child public in this way would make me feel a bit uneasy.

I don’t think YABU, it can’t hurt to try- people don’t have to give any money if they don’t want to/can’t. I’d actually possibly be more likely to give to something like this if it was one of my friends than I would to a charity (I do already make regular payments to a couple of charities so generally can’t stretch to any more, but I’d probably find something extra for something like this). The ‘your child/ your responsibility’ thing seems harsh, it’s not like you’re asking for money to pay for a holiday.

I used to work as a secretary for a Paediatric consultant. I would say ask the school SENCO to do the referral for ASD assessment, rather than the GP.

The doctor I worked for would pay closest attention to the SENCO reports rather than the GP, as the teachers are the professionals who know the child the best.

Referrals from GPs would not be actioned further until a school report had been received. There was always a massive backlog of requests and that in itself would take months (this was pre-covid, so probably worse now)

Have you looked at the website Parents In Need? I believe they pay for these reports in some cases.