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.

So after completing the grid DS is mostly in the ASD side with some (surprisingly not many) overlaps and some I am not sure on (a bit young probably).

Your son has had quite a number of assessments but none I can see from an educational or child psychologist. The British Psychological Society (BPS) is the gold standard for finding someone and you can search their website under location and specialities. I'd start with that and it's a lot less than £2K

I would agree that assessments are usually less than 2k for a clinical or educational psychologist assessment. However, I disagree that BPS membership indicates a gold standard. To use the titles Clinical or Educational psychologist practitioners must be HCPC registered. Membership of the BPS is not a sign of a higher level of qualification. I’m assuming as OP’s son has an EHCP he must have been assessed by a LA EP as some point .
OP. - I’m sorry for the trauma you have gone through. Please don’t feel you have to share any or some of the details in your thread if it is triggering for you.
One idea might be to move your thread to SEN and ask for some help around advocating for support as per what is in the plan. IPSEA or SOS SEN can be helpful in this regard.

[quote drspouse]@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.[/quote]
Bother! Doesn't meet the ASD criteria.

@Boscoismyspiritanimal The BPS is a starting point for anyone looking for a private psychologist. No one is saying they will not be on the register you mention as well. Their qualifications and membership of other associations will be on the BPS. I'm not sure you are right anyway with your comments; there are many different types of psychologists and a clinical psych is someone who is chartered and has post grad training. Obviously anyone who has a degree in psychology is not a 'psychologist' - they need clinical experience and further training as well.

@Boscoismyspiritanimal Are you familiar with this site? It's unlikely that anyone working as a psych of any kind is not on the register ever if they are also a HCP. (I have worked with a lot of psychs when I was in education, both clinical and educational.) www.bps.org.uk/public/what-is-psychology

@squirrelnut Have you contacted these people to ask for advice on a diagnosis? www.autism.org.uk/advice-and-guidance/topics/diagnosis

Just be careful as you may not get the result you want. We spent £2k on a private assessment and it came back inconclusive. They wanted us to pay for in school observation which would have set us back almost the same again as the clinic was an hour and a half away. Convinced they were just trying to rip us off, particularly as the child has since been diagnosed by the NHS.

When is he due for an annual review of his ehcp?
If it was me, I would be aiming to prove that the school - with the attached current funding - is incapable of meeting his needs, and going armed with any local SEN schools that could potentially better meet those needs.
At the point of review, you can request a placement transfer. You will probably be denied. At which point you take your local authority to mediation and then to tribunal to get him into a school that could better support him. Or at least get his funding pushed up.
Part of the point of an ehcp (if they are written well and funded properly) is to take an individual approach to the needs of the child. A further diagnosis in and of itself may not be of any more use to you by itself. Especially if it contradicts assessments by Ed psychs / psychiatrists etc that have already been commissioned by the local authority. Having a diagnosis can often "feel better", but does not necessarily guarantee any different treatment for your child.
Best of luck. And no YABNU to try a go fund me. If people choose to donate, that's up to them.

squirrelnut TBH just going on your earlier list I'm not surprised which side of the grid he's ticking.

Obviously only an experienced clinician is going to be able to truly confirm or deny what's behind the difficulties, but autistic symptoms in attachment disorder do present differently. (and the old association that it's automatically caused by parents or neglect, is as outdated as refrigerator mothers causing ASD)

Regarding education and part of the reason I looked at your EP report with concern, is that most children with ASD have what most call very 'spiky profiles,' and there's a need for clarity about what exactly is what or they end up with layered damage as all the focus is on what they're not doing, doing differently from NT dc's, or on what is causing problems for the school.

You can educate focused on disability or ability. Most if not prompted otherwise, tend to focus on the former, paying lip service to the later. (we started that way round and did a full 360 with good results)

This is from Professor David Skuse (whose work was influential in the grid's development) and I found a useful quote in our battles:

"Many individuals with ASD have both strengths and weaknesses in their verbal or nonverbal skills. It is of great clinical importance that their cognitive profile is therefore usually exceptionally uneven. Unless this is quantified by psychometric testing, progress through education can be compromised, and without remedial action the areas of weakness can have a major impact on their everyday life."

that's the useful quote but importantly goes on to say:

"That said, the pattern of verbal and nonverbal skills, working memory and executive functions, is unpredictable and highly variable."

In other words, (and paraphrasing the inventor of Kumon) fit the shoe to the child, not the child to the shoe.

@squirrelnut
I have read through the link you posted and am really quite shocked by it. Please do not listen to bs about ASD being caused by your depression when you were pregnant or any other "emotional trauma " in-utro. This is just another way to blame the mother, yes it's put in a nice medical way, which is why it's so dangerous.

Yoholyolo interesting - the 3rd setting he attended often referred to his spikey profile and I never really understood what this meant. No one has mentioned that for a good while though.
There is a list of strengths which are mainly physical....
We have the added issue as well that DS mainly refuses to engage in any sort of assessment, generally lying on the floor or under a table so I don’t think anyone really gets the full picture!

One interesting trait DS has is that he cannot stand praise or attention to be focussed on him at all and it makes him quite angry! Eg. Well done DS you have tried some pear - he will throw the bowl in your face and storm off

Cabinfever10 we don’t ever seem to be able to win. When I’m feeling rational I can accept that but it’s very hard when I am low.

If you want to start a go fund me then do it. People can choose if they want to donate or not.

The words spiky profile or 'cognitive profile' are incredibly important and the older they get, the more important they become. (yes they can do many adult things and or something most can't, whilst being unable to manage their own hair etc - they are not being difficult, attention seeking, tied to apron strings etc, they are being a normal young person with ASD and a spiky profile of what they can and can't currently do efficiently.)

Being under the table at 5 when people want to 'mess with you' seems reasonable enough... I think I'd put the psychologist under the table in a mainly bare room, armed with a good box of Lego that they were already engaged with before bringing dc to room, and no clipboards or note taking allowed.

You find the style of parenting that works for your child and you: It may be praise or attention he's not liking, but "Well done you have tried some pear" could very easily be perceived as criticism here.
I wonder if praise/attention over pears etc is actually being read as commentary/criticism on having not previously tried pears? (and you're ruining the new and thus anxiety producing pear experience by criticizing - If that is the cognitive process, then frustration hurls the bowl at confusing provider, critciser, ruiner)

We now have good communication levels, but I often instinctively add the word please to a request, a split second after asking, (because hind brain realizes I didn't say it) instead of as part of the sentence. To this day it nearly always results in anger, and if pushed for explanation a negative assertion that it means I'm demanding it's done immediately and is a criticism that they didn't jump to it as I finished speaking. Doesn't matter how many times I explain that's not what it or I meant, it still is perceived, felt, and taken as criticism. It's frustrating but battles need to be picked.

@squirrelnut my ds's initial assessment at two and a half stated moderate autism, global development delay, learning difficulties and extreme challenging behaviour.
The autism was pretty much textbook the other diagnoses were more because nobody could formally assess him because he complied with nothing, had no joint attention and was more interested in throwing or destroying everything he got hold of than engaging with any assessment. It was well known among all professionals working with ds that they needed to duck as they walked in and were advised not to bring anything with them that would cause injury when he inevitably threw it at them at some point.
Later on though at a reassessment he was found to have no learning difficulties in fact a higher than average IQ and no developmental delay but some speech and language difficulties. In time with maturity you might find your son's difficulties can be better determined.

@JinglingHellsBells

The British Psychological Society (BPS) is the gold standard for finding someone and you can search their website under location and specialities

Not true. All that membership of the BPS means is that a psychologist is happy to spend £x00 on the membership fee.

I have read literally dozens of reports from ed psychs over many years. IMO the ones done by the education authority are often very limited and, as resources are limited for remedial intervention, they are almost driven to downplay any issues- this can be done by limiting the type and number of assessment tests.

What you are saying is not just untrue but is actually unethical. No HCPC registered psychologist would ever dream of ‘downplaying’ any issues; conversely, they are more likely to over-emphasise a child’s needs specifically so that adults at school/the local authority has a clearer understanding of the help needed to support them.

[quote JinglingHellsBells]@squirrelnut Just to repeat- there are no paediatricians working at OWL- only clinical psychs with a very basic degree in psychology. They don't appear to be registered the the BPS (but you could check.)

IME schools will only accept a diagnosis of ASD etc by a paediatician[/quote]
Again @JinglingHellsBells you are incorrect. Clinical Psychologists require a three year doctorate degree to qualify. Not exactly a “very basic degree in psychology.”

[quote JinglingHellsBells]**@Boscoismyspiritanimal* The BPS is a starting point for anyone looking for a private psychologist. No one is saying they will not be on the register you mention as well*. Their qualifications and membership of other associations will be on the BPS. I'm not sure you are right anyway with your comments; there are many different types of psychologists and a clinical psych is someone who is chartered and has post grad training. Obviously anyone who has a degree in psychology is not a 'psychologist' - they need clinical experience and further training as well.[/quote]
@JinglingHellsBells No. A chartered psychologist is simply one who has paid a membership fee to the BPS to become a chartered member. It’s not mandatory for a practitioner psychologist, unlike registration with the HCPC.

@JinglingHellsBells following on from what @FO70 has said could you just confirm that the Beacon House you referred to here:

The Beacon you linked to has been at the centre of controversy for many years. I was in education (special needs) for many years and remember it being flagged up then as not all it seemed. It is most definitely not mainstream and certainly not regulated

Is not the Beacon House which we have been discussing here, just to clarify?

Incidentally when you say you have worked in "this area" for a long time, what do you mean ie in what profession?

Thank you

I have decided to borrow the money to fund a private Educational Psychologist report - sought personal recommendations from local autism Facebook group and checked credentials. The person has also previously worked for the LA (not ours) which I think is useful.
I can link if anyone is interested.
The next appointment is towards the end of November which gives me time to put money aside as well.

I think that is an excellent idea.

good for your op, sounds like a great plan.

@JinglingHellsBells
has said of previous threads he/she is retired.

[quote Tomatoesneedtoripen]@JinglingHellsBells
has said of previous threads he/she is retired.[/quote]
Yes, I had a look too, also the poster has seemed a little confused about the training and titles of psychologists.

The job titles of clinical psychologist and educational psychologist are protected terms, meaning that only CPs and EPs registered with the HCPC having followed approved training routes (which has been at doctoral level for the past 11 or so years) can use this title.

There is no such protected job title or training route as a “child psychologist,” although you will find CPs who specialise in children and you will find EPs who may title themselves an “educational and child psychologist.”

EPs do not just do IQ tests. They are trained to formulate holistically and can deliver therapeutic interventions. They can support children and young people 0-25, and their families, across the four areas of need, and I think the OP has done a great thing in deciding to go down this route.

BPS membership doesn’t really count for much other than meaning that the EP/CP in question has decided to pay membership dues for a fancy magazine and being able to call themselves chartered!

Also just to add, Clinical Psychologists/Specialist Clinical Psychologists are highly qualified. Assessment of autism is a normal part of their remit. They are often better placed than a paediatrician in some instances as they understand the impact of trauma, attachment and how it manifests behaviourally. I’m not sure why their expertise is being questioned here.
I can’t comment re Beacon House as I have no experience of the centre but any of their practitioner psychologists, occupational therapists will be HCPC registered (you can check the register, it’s a public register).