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.

It's really important that the ASC assessment follows the NICE guidelines, we had my DD assessed privately and unfortunately it didn't follow the guidelines so wasn't accepted officially. However it did open doors for us, getting seen by CAHMS, her school taking it seriously etc. We were put on a waiting list for over 2 years for the NHS assessment, in the meantime my DD got hospitalised and eventually got her assessment done there. It hasn't made a huge difference however, the EHCP is much more important in terms of health and education planning.

Actually I am just going to say this again in case it got lost in my long post above:

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.

In summary, the treatment for ASD/other disorders/LD vs 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.

I really feel for you.

CAMHS is dreadful in my area of the country too. They are badly letting down children. In our area there is 1 person on the ADHD team. That person cannot diagnose or prescribe so anyone waiting to be assessed just has to wait - friends child has been waiting 18 months - that is a long time in a child's life whilst struggling at school unable to concentrate. Complaining is pointless they just say no staff!

Do the fund me - if cannot hurt.

@squirrelnut It’s my understanding that the EHCP is what the school use to apply for funding. It could be that the plan doesn’t cover his level of need or the LA restricts funding. You could ask on the SEN board for advice with this.

@scotsllb

Please don't think I'm being rude or ignorant but I'm really interested in what kind of trauma a whilst in utero affects early childhood and in what way ?

Exactly what I was thinking??

I haven’t read through all the thread but I got a private diagnosis for my dd.

I’ve been told I paid for the diagnosis I wanted by her own father. It was not recognised by the school so I sat on the nhs waiting list and got the same diagnosis that is now recognised but I still get barely any help.

I would consider doing a GoFundMe to raise money for counselling for your son and for you, first individual and then family counselling. It will be much more helpful to a family unit than chasing a spurious diagnosis.

@Babyroobs hopefully the links posted and 1001 critical days have helped your understanding?

squirrelnut it sounds like you have an awful lot on your plate and that you are struggling right now. I think many people would struggle with looking after a child with complex issues and you're doing it with a complex history of trauma.
Ohtheroses wrote a very useful post, definitely worth reading it.
I just thought I'd throw my twopence in. I was in a similar situation, CAMHS repeatedly discharged after initial assessment and we were lucky to even get the assessment in the first place.
I went back to the GP repeatedly and eventually got my DS referred to the Consultant Pediatrician at the local hospital. This took years and many visits to the clinic where I insisted he be assessed for ASD. The Consultant eventually took my son's case to the Commissioning team after I took the Head of the Special Education Unit with me to an appointment. (DS had an ECHP and was taken out of mainstream primary at the age of 9.) The upshot of this was the trust agreed to pay for DS's ASD assessment at Great Ormond Street. We are in Hertfordshire so it was easy to get there. The very wonderful team at GOSH diagnosed HFA and it was a huge relief and validation. (Before this hapoened I too had been told I wasn't parenting properly and my son just needed better boundaries and he couldn't possibly be autistic as he makes eye contact etc etc).

Unfortunately, my trust won't pay for treatment from GOSH and they don't provide it themselves. We have a diagnosis but not a lot else.

What helped me was having as many people involved as possible. It's much harder for HCPs to dismiss other professionals than parents or carers . I would definitely advise speaking to Children's Services, if you haven't already. You need people on your side, and don't stop asking for help. Remember, the squeaky wheel gets the grease. It's exhausting but you will get there. It sounds like Children's Services should do an Initial Assessment of your child anyway as he clearly has complex needs.

Join autism groups, national associations etc. Get as much advice as possible from reputable sources. Keep records of everything. Ask in meetings if you can record the conversation as it will help you remember afterwards. Take people with you if possible to appointments. Make notes of everything.

I'm sorry you're going through all this and I hope you, your DS and your family get the help you need soon. Sending you the best of luck.

I had a similar experience to you, its so frustrating. I wrote to my local mp and told him the battle I was having, and that I had waited 3 yrs for a Cahms appt.
After about 3/4 weeks I received a letter in the post for a appointment at a private clinic.
It may have been a coincidence that they outsourced us at roughly the same time I got my local MP involved.
My son got his diagnosis, he was 6.

I've known people crowdfund for holidays before so go for it. It's as worthy a cause as many others

OP this is the video in Beacon House resources about recovery from developmental trauma:

It might be cheaper than 2000 to get a diagnosis from Beacon House, and with a diagnosis of what is needed, and an indication of future costs, you may be more successful in getting funding from go fund me and liaising with the school/GP etc

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.

Haahaahaa!

I think people really don't understand just how underfunded both the NHS and SS are and just how little to no support there is for children and adults with SN.

I've yet to hear a single positive account of CAMHS. They're entirely unfit for purpose.

The attitude towards parents of children with SN and carers is shocking, too.

He might be too young to be diagnosed, but please, you can set up a Go Fund Me for anything legal. People don't have to donate.

YANBU

@squirrelnut

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.

Wasn't this trauma to you rather than to him? Terrible though it is.

@squirrelnut I'm so sorry this has been such a long road- if you google search your area there are often organisations to support parents with anything ehcp related (ie- placement appeals content the assessment itself)

If you can find one of those organisations then they are so useful and can help you get to the right person and with the right info

I think they changed their names recently to SENDIAS so if you search your local authority followed by SENDIAS there will hopefully be a service that can support x

TraumaTrauma thank you so much for taking the time to post such valuable information. I am very glad I posted now even if I don’t think the go fund me will help.

I have been trying to parent therapeutically and have made some progress and “closed the gap” a little eg. At 3 DS was functioning very low around 6-11 months where we now at 5 more like 36 months maybe even more in some areas. Some areas have not moved eg. inflexibility of routine, social interaction, eye contact.

YANBU. Nobody is compelled to donate to a gofundme, and people use them for much less virtuous purposes than helping a child in need. You may find that many people are willing to help. I would contribute if a friend did this.

I second the suggestion of a carer's assessment from social services. It may open the door to additional support for you. Most people don't know that they are entitled to this. I agree with PP that you need as many people/agencies involved as possible.
Definitely contact your MP. they can often get things moving wrt NHS appointments etc.

how old is your child and what support are you getting?

Is he in school? does he have an EHCP?

I see you are getting DLA already.

I have child with severe ASD, leaning different and a chromosome disorder. She is attending special school and we get DLA. nothing else. No therapy, no respite... just school and DLA.

If school is sorted I would not bother with a private diagnosis as it will just cost you £££ without bringing about support. I guess it depends what you hope a formal diagnosis would get you on top of what you are receiving now.

trevorandsimon this is what I also thought initially and had to do quite a lot of research before I would accept otherwise.

@squirrelnut I'd be very keen to see a link to whoever is charging £2K for an assessment. I have a background in assessments of certain learning difficulties (and taught children with ASD / Aspergers) and that figure sounds way out to me.

I might expect you to pay around £800 for an assessment if it's lengthy but most private consultants charge around £300 for the first appt- you would normally see a paediatrician for a diagnosis or possibly an educational psychologist (or both.)

Sorry to say but a lot of these centres are ripping off desperate parents like you.

Op, I'm going to pm you with a link to someone that might be able to help, I'm pretty sure she doesn't charge cost close that much for a private ASD assessment.

She does a free initial consultation, and can work remotely (which is useful given her location).

@trevorandsimon
Wasn't this trauma to you rather than to him? Terrible though it is.

Trauma to the mother can affect a baby in utero

Hi OP, haven’t read the full thread but just a few points:

1. What do you hope will be better if you get a diagnosis? Professionals will only give a diagnosis if it is an accurate description of a child’s needs. Sounds like your child is quite complex and maybe they feel that it’s impossible or inappropriate to give a diagnosis, when his needs won’t match that diagnosis.

1. Some parents (not saying you) think that a diagnosis means something can ‘be done’ about Autism or that their child will be suddenly understood. Autism is a lifelong condition, the diagnosis can give a shorthand to knowing how to support a child, but if the diagnosis is not a good fit then it might actually do the opposite and cause people to make innaccurate assumptions. It could do more harm than good.

1. As you already have an EHCP, you are probably already have the maximum amount of money / help that can be provided, sadly.

1. This is going to be hard to hear, but it’s a sad fact that many people are suspicious of parents who militantly pursue diagnoses against the opinions of professionals. The accusation is that they only want the diagnosis to claim disability allowance. I’m not accusing you of this at all, but just to prepare you that you may be laying yourself open to this sort of accusation, especially when you bring money into it. I would tread carefully.

There's a place in Newcastle that does private assessments. It's free too. You stay there and it's a proper, full on assessment. I can't think of the name off the top of my head which is annoying.

As for a go fund me? Meh, people do them for all sorts. I'd do ate for something like this, what I'd do is start small with maybe a £500 reach and go from there.