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.

If you focus on improving DS' EHCP you may find DS, and subsequently the whole household, copes better. That was my experience with DS1&3. Since the EHCP should be needs led not having a diagnosis shouldn't be a problem.

I agree with the others saying I wouldn't go to Beacon House or Owl Centre for assessment. Although I do think some of Beacon House's resources can help explain to those with little experience e.g. the fight/flight/freeze/collapse (although missing fawn), you just have to be selective and pick bits out.

@EdwardCullensBiteOnTheSide

DS has other needs besides probable ASD, and needs constant supervision. He also has a 32.5 hour ECHP which are as rare as rocking horse shite in my LA. Have a look at the Cerebra guide, it's what I used.

@mumofthreewhatsfortea

We just went to the doctors and asked for a referral to the paediatrician which took a few months to get an appointment but then my son was assessed .

I don't really understand why the doctors can't do this for you ?

Sigh. Why are there so many hard of thinking people in this world who can only see their own experience and are completely unable to conceive that their own experience is not universal?

'Went to the doctors', are you British? I've only heard this term in other countries.

In many areas of the UK, you can't just 'go to the doctors', you have to go through bloody CAMHS to get an assessment.

In many areas, CAMHS is unfit for purpose and underfunded so you never get an appointment or they dismiss you, over and over.

EdwardCullensBiteOnTheSide DLA is based on needs rather than a diagnosis. I second using the Cerebra guide. Definitely apply, there's nothing to lose.

@didntgetadiagnosis thank you, I will wait and see what happens with the diagnosis and then look up to see if he's entitled to anything.

I should add I’ve never been to Beacon House - Only came across them via google once the consultant paediatrician and psychologist explained to me about early trauma is that not right then because I did find it hard to understand at the beginning. It’s also a source of great guilt / shame for me so if it’s not 100% I would like to know.

I also used the Cerebra guide to help with the DLA forms and was successful first time.

I forgot to add he has also seen the Educational Psychologist who I thought was very nice and took time to listen to our story. Her report is very detailed and she suggests most of the interventions which are now on the EHCP. All 3 pages of them!
The school downplay things so far - eg. Oh all kids like to run in the road, oh all 5 year olds are up all night stressing about if the socks and pants are in their correct drawers etc

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?!)

From this it sounds like he already has relevant professionals involved. For example, an educational psychologist has assessed DC as having severe LD.

This is said kindly, but what do you think a private assessment will practically offer that the existing assessment from an educational psychologist won't?

If you're looking for one person to have an overview of all your child's related needs then that's usually their parents, rather than another external professional. If you want a private service to be coordinating that then it will probably be very expensive, and substantially more expensive than an initial private assessment.

If there's issues with how the EHCP is implemented then talking to the school is likely to be more effective than spending thousands on another assessment. EHCPs are needs driven and come with a set amount of money, plus a certain amount funded by the school. Children with EHCPs should have regular reviews with parents and relevant professionals. Your next review would be a good place to talk about your concerns.

It sounds to me like you have a lot on your plate and may benefit from some support from a charity or group that works with parents of children with SEND as it seems like you're hoping another diagnosis will be the magic key and I don't think it will be.

what doctor actually suggested the in utero trauma? was this camhs or community paediatrics?

Trauma and its effects are real and they are not your fault, op.

As a pp has said, some children with attachment disorders can have quite similar presentations to children with autism. From what you've said about your pregnancy, it wouldn't be surprising, and wouldn't be your fault if your son had an attachment disorder. I'm not saying this is what it is, but please please trust that an attachment disorder is not "bad parenting."

No. I do not think you should do it and I am saying this as an SEN parent. You can ask your GP to write an urgent letter to the Autism Diagnostic services to assess your son urgently. This would put pressure on the team and your son will be seen quicker. Do this every month if need be. and you can ask to be out on the cancellation list.

Honestly, I would get DLA and use money to get your son seen by a private speech and language therapist, occupational therapist, art therapist, yoga, horse riding, museums, social skills groups.
Your 2 grand is best spent on these things things. Once you go to a diagnostic Autism Centre, they will diagnose ASD, give you a bunch of leaflets and leave you on your merry way. The rest is up to you. His 5 now, so if he needs support in the classroom, get an EHCP for him.

Even if you get a private diagnosis the NHS won't recognise it so seems pointless. You won't ge any support or money if that's your goal

This is lifted from the EP report:
In sum, based on my assessment, X has substantial learning difficulties on account of developmental delay in the following areas of learning and development:
 Cognition and Learning

• He needs to develop his ability to attend to and learn from the educator’s teaching model;
• He needs to access a group learning activity and make progress in line with his ability.

 Communication and Interaction

• X needs to develop his receptive language skills and demonstrate understanding through compliance.

 Sensory and Physical – X needs to develop his self-care skills.

• He needs to develop his pencil control.

 Social, Emotional and Mental Health

• X needs to develop his self-awareness and self-regulation in terms of identity, experience and emotional reactions.
• He needs to be able to develop his understanding of group membership so that he recognises and settles into basic classroom routines.
• X needs to form a positive attachment with an adult and develop more helpful interactions with adults and peers. He needs to feel capable, competent and valued. - X needs to develop his risk awareness and safety in the community.

Tener it was the community paediatrician initially and then the CAMHS psychologist also discussed it with me.

Please be careful - fundraising for anything medical can backfire massively

We once had to fundraiser for medical equipment not available on the nhs I was then hit with allegations of munchausen by proxy and a big part of it was fundraising
They accused me of wanting attention and financial gain it was absolute horrific and I had to fight to clear my name
Also going private for a diagnosis is frowned upon we had that thrown at us too

I even had to prove I’d not misappropriated the money luckily I had every single receipt

Your EHCP Is very poorly written. It is not specific... it says "X needs to develop social communication skills"... but how? Within a small group of? How often is SLT seeing him? Once a term? Twice a week?

Please contact SOSSEN and IPSEA for EHCP advice.

Honestly, I would get DLA and use money to get your son seen by a private speech and language therapist, occupational therapist, art therapist, yoga, horse riding, museums, social skills groups.
Your 2 grand is best spent on these things things.

Do you seriously believe DLA is enough to purchase all this? Fucking hell. She's using it to purchase respite care.

buildingbridge that’s from the EP report, it’s further defined in the actual plan.

Createausername hadn’t thought of that. Wow. What a cruel world we live in. Sorry you had to go through that!

Batshit Don't be stupid- I was merely listing. I said "use DLA and (other) money). Of course DLA can not afford all of this. But it's a start. I would not use DLA money for respite. If I raised two grand, it will be going towards my sons treatment and social life- not to be spent on a diagnosis--- unless that specific diagnosis can is needed to get Into a specialist school where they only admit children with ASD.

Based on the excerpt from the EP report it doesn't seem detailed, specific or quantified. The provision in the EHCP will be taken from reports, so if the reports aren't specific neither will the EHCP.

One helpful resource highlighting the difference between ASD and attachment problems is the Coventry Grid.

It was awful just be aware of it keep all your paperwork etc
If you go ahead try to pick somewhere that does nhs too so it’s recognised that may help as well
Good luck x

I would not use DLA money for respite.

She won't get a break otherwise, she's already said that, or her other children.