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.

A private diagnosis is useless schools won't follow the advice of a private diagnosis it never helped my dd because the diagnosis needs to come from the NHS so in the end, it was a waste of money it got her no extra help at all we had to keep pushing to be seen by camhs which took 10 referrals 4 was done by our gp, 3 by the pediatricians and 3 from school we were eventually seen after the last school referral. She now has a diagnosis of ASD and ADHD from Camhs and is getting extra help in school.

a private appointment in an NHS hospital is accepted by education.

[quote rosiethehen]@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. [/quote]
Attachment disorders are real and they are not a criticism of the parent. Yes, they are often seen in cases where parents have neglected a child's early needs, but this is not the only way an attachment disorder can be developed. A good parent can have a child who develops an attachment disorder for lots of reasons.

@buildingbridge The consultant who diagnosed ADHD said that sensory difficulties are common with ADHD; social communication can be a problem on its own or in ADHD due to the difficulties with processing too many cues at once; and he has a butterfly mind, not rigid.
So that's why I say (and the consultant also said) he doesn't meet the ADHD criteria at the moment.

maybe silly question but would/could an attachment disorder present as severe learning difficulties?

I would have thought attachment disorders have other overlaps with ASD (e.g. the emotional side, building connections with people etc) but I didn't know that it could cause such as significant cognitive issues resulting in severe learning difficulties.

There is very little support out there. My son was diagnosed at 3 years old. We’ve paid for every bit of help he’s ever had. He’s non verbal (he’s an adult now) but he was signed off of speech therapy at 4 years old as they couldn’t help. So even with a diagnosis there is literally no proper help out there.

I think you need to try and find the money yourself or ask friends or family. It is, a big ask.

The diagnosis is vital and important to you, but it won't be to a bunch of strangers considering contributing to go fund me.

Be aware, private diagnosis may not be recognised in some counties in The UK. I would find out if your county accepts private diagnosis as a first step.

Can you take on additional borrowing via a loan or through your mortgage?

If you have been through the process to get DLA then your child obviously has significant needs, what has the school SENDCo referred you to the Autism team? Have you asked them to?

I'm not an EP but actually tbh parts of your EP's report reads as a bit of a wish list of what they feel needs to happen for your DS for him to reach NT appearance and fit mainstream school.

In itself it may not actually be right or the right route for him, depending on what's really going on. I'd be deeply unhappy with a lot in that report, myself.

But for it to mean anything, how each of those targets/needs could and should be met, and how the success or failure of them should be judged and over what period of time, and by whom, is what needs to be focused on if it's to be meaningful.

Cognition and Learning
- He needs to develop his ability to attend to and learn from the educator’s teaching model;

Interesting that the EP identifies a need to fit the child to the education model rather than the other way round...

The 'educator's teaching model' may (or may not) be entirely inappropriate for the child's learning needs.
Example (from RL) educators teaching model for touch typing was Mavis Beacon Program - a two handed ten fingered program with expected timed progression.
Child with CP and use of 3.5 fingers on one hand and vague thumb use on other, failed the inadequate teaching model for years before we met and it came out how he was being taught.
In the old days, following the text with your finger as it was read aloud was how we learned to recognize words in class. (See and say model) That 'educators teaching model' automatically failed deaf and many hard of hearing children as well as the dyslexic, who were labelled as having lowered intelligence as a result.

My ASD DC couldn't access the standard school 'teaching model' and the older they got, the further behind they fell despite a high IQ. Conversation with GOSH pointed us to discovering DC needed a non linear teaching method, and discrete teaching in some subjects, to reach their potential. (total about turn once taught to the condition) Also utterly unsuited to understanding of group membership so that he recognises and settles into basic classroom routines. If we'd gone down that route to achieve that, it would have been disastrous. (accepting concepts of 'group membership only started getting through in their teens)

- He needs to access a group learning activity and make progress in line with his ability.
At 5 mine couldn't have done both of those things simultaneously, and the inability to do the first, meant the second couldn't be achieved.

Where is your dc's measured ability? How would you know if they were in line with their personal ability? Has there been an IQ test and a way of testing their strengths and weaknesses?
I'd strongly advise you do a bit of a restart here and gather all your paperwork and talk to IPSEA.

That's a good point @Yoholyolo. I just bristled at the idea that getting a diagnosis doesn't help, as we had so many years of school disregarding ds's needs and painting, me in particular, as a highly neurotic demanding parent. I also wondered whether, at 5, other avenues should be investigated wrt op's child's needs - in our experience, this took some pushing!

I'm not sure if it's been pointed out, but the ed psych report mentions learning difficulties, rather than learning disabilities (which I'm guessing may not have been formally assessed)...and obviously there is a big difference.

There are definitely learning disability services, differing depending on area - we have been under learning disability nursing services and are under learning disabilities CAMHS.

@solidaritea

Attachment disorder is frequently trotted out to parents of neurodiverse children in an attempt to get out of an autism or adhd assessment.

It's the dark side of some camhs departments. One which you have to be on the receiving end of before you can understand the issues.

@hoodathunkit what you are saying about Beacon House and Kolk is absolute rubbish. They are mainstream, highly qualified with highly regarded professional qualifications. Zero to do with any cult and have zero input re abortion or anything other subjective issues. Beacon House has a team of clinical psychologists - not sure if you know much about clinical psychology but you need a post grad qualification to become one, it is highly competitive - people i have known who have done it have had firsts in their under grad psychology degree from top universities. Kolk is a world renowned psychiatrist - I first came across him when he lectured at a Yale conference - he has been around for decades. Much of the research to do with trauma/utero affects is based on peer reviewed neuroscience research. It is absolutely changing the lives of people affected by early trauma, the aim is to help people live happy healthy lives. Your posts are completely misinformed.

@squirrelnut please don't feel guilty about the early years, the main thing is to seek the right help now - but please also don't listen to posters criticising the above main stream work. If it weren't for this research (Kolk, others) my child would be in a special needs school.

@rosiethehen I am sorry you were failed but there have been many developments in the last 15 years in relation to MH led by neuro science. Whether ASD, ADHD trauma, attachment, LDs etc, the important thing is to get it right.

@traumatrauma Could you link to the Beacon House Home page or a page on their website where it lists the professionals working there? I can't find it on their site anywhere.

I have googled them and what did come up was a review on the NHS site which is far from glowing.

www.nhs.uk/services/clinic/beacon-house/P109553/ratings-and-reviews

Sorry @traumatrauma the link appears to be another clinic with the same name.

However, my first point still stands- I can't see anything on their website about who they are.

It's ok Bupkis, I totally get it.
I've been through serious hell and high water to end up at the point of knowing and understanding about the significance of high and low incidence and funding implications, and why and when a private diagnosis may be counted or not. It's something that you need to be the same parent of a couple of SEN children with very different disabilities and opposite responses to them, to have needed to do that research.
Don't suppose you ever got an apology?

Funnily enough trauma and abuse were offered up by school and LEA as an alternative explanation for DC2, prior to GOSH ASD diagnosis, (a very different response to earlier DC with rare situation) but the suggestion wasn't that it happened in utero. Dark sides indeed.

Here is a link to the team at Beacon House JinglingHellsBells.

A good parent can have a child who develops an attachment disorder for lots of reasons.

Solidaritra thank you for posting ^^ that. I have a DS who, along with PTSD, has attachment problems relating to a bereavement. When others, including some professionals, find out we are often judged. Many assume we are neglectful which isn't the case.

@squirrelnut I also meant to say, to reply to an earlier post - there is a certain amount of psycho quackery out there about therapeutic parenting and in fact if you look at the longstanding (decades) of peer reviewed parenting/child dev research, it is therapeutic in nature - some of the "therapeutic parenting" out there is quite different and ime quite dangerous as it isn't based on research. But actually that wasn't what I was referring to - the therapeutic work I did was more to do with calming the nervous system, which then has a knock on affect on how well the brain works, helping with "joined up" and coherent thinking, strengthening the part of the brain which relates to executive control. Once my dc was calmer and had better impulse control we were then able to work on talking strategies - and his ability to cope with groups and lessons at school increased. It was hard work, to be honest, but worth it. this was 5 years ago, beacon house were not around, I have come across them more recently and their work is generally in accordance with my experiences. this is not to say all this applies to your child - as you say it may be a mix of things, there may be some neurological things also going on, and that might become clearer after some therapeutic work.

@JinglingHellsBells this is their website:

beaconhouse.org.uk/?section=welcome-to-beacon-house

there are other beacon house clinics as you say. the people who have posted on mumsnet who have used them have rated them highly.

I don’t know if this link will work but here is a page on Beacon House team:
beaconhouse.org.uk/about-us/the-team/

www2.oxfordshire.gov.uk/cms/sites/default/files/folders/documents/virtualschool/processesandforms/resourcesandpublications/CoventryGrid.pdf
This grid might help unpick your DS’s issues and help your argue your case more.
My understanding is that a private diagnosis isn’t much use usually anyway. It’s a rubbish system OP and I’m sorry your not being taken seriously.

@10brokengreenbottles I agree with you - it can also be the case if a child has needed neonatal help, if the child becomes seriously ill in the first couple of years of life, it can also happen if the mother was ill and the normal attachment process was affected. Judgement does not help at all, it is really important to work to help and recover.

ShouldWeChangeTheBulb thanks for that grid I am printing it out now and will go through it. I wonder why the professionals have never done it with us?!

ShouldWeChangeTheBulb Squirrelnut That's the grid I mentioned earlier. I direct others to it when they repeatedly ask have we considered ASD for DS1 despite knowing he has been assessed by a specialist team. I found it helpful to give a copy to anyone caring for DS, you may find the same.

Trauma In the beginning it felt like a kick in the teeth when others judged us (let's be honest they meant me because it's always the mother you gets the blame) and I spent ages explaining the background, now I just reply that until they have walked in my shoes they have no right to judge us.

I spoke to my school and found the name of an edpysch who was well used. They also worked privately and the school said they'd accept the report.