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Well done Furcifer! It took me until my daughter was an adult - and she’d been victim of a very serious crime - to finally get the ADHD diagnosis. I’d come across it accidentally years before - tentatively raised it with the GP who’d dismissed it. I read a lot and treated her as if she had it - her school which was a special school did the same. When we finally tried again for an assessment the MH professional said she didn’t show up as needing a full assessment and discharged her. I hadn’t pushed the symptoms because I felt he might see other things too which would be useful to know but that was a mistake - I should’ve made the case. Anyway we went privately and had a thorough assessment and diagnosis a week later! We had a really good experience of the local adult autism service which was free. (She was just eligible at that time) Being able to go privately is a game changer. I also think BD probably has it from the little I know of him.

Yes Donatella is right - and continues to press the message - of course there’s inevitably attachment issues and trauma but usually so much more that specific help and advice is available for. I think awareness of different learning difficulties should be part of the initial training (maybe it is now?)

As for the ASF I agree from my own experience - which I thought was just a fluke. The person we saw was highly qualified but in my experience useless. Seemed to be spinning it out with meaningless stuff but ignoring the important things as my daughter didn’t bring it up herself (speaking about feelings and how things have affected her). She had a number of “filler” type sessions towards the end of the first year which took it into the second. She didn’t care when / why my daughter missed sessions as she was paid anyway. I’ve heard some really positive stories of ASF sponsored work but I guess we were unlucky

And she always called me Mum!!!!!

When we adopted ours - eldest now coming up to 21 - it was always presented by all the professionals we came up against that ALL issues could be laid at attachment’s door, even being told that a child could transfer attachment! There was a poster here who was slightly further ahead in the adoption process and she encouraged me to look outside that box. We’re still in contact but she’s no longer here.

My eldest is NT but not without his own issues but has a pretty good understanding of himself now in part due to his degree where he’s doing psychology. We have some interesting conversations. And in fact he’s doing his dissertation on adoption, training, preparedness of prospective adopters. He listened! He’s been quite surprised at some of the comments he’s received

Then along came my other two. Middly was described as a busy child (always look for those euphemisms) and oh boy did we know it. But again we got everything lumped into attachment - not even trauma. And then one day the paed he was seeing saw him at his finest and referred immediately to camhs for ADHD assessment. We’d previously been assured by HV that definitely no ADHD - she knew what it looked like and this wasn’t it. Hmmm … he was dx at 6. Only then dx ASC following the retirement of his then psych. New one saw it.

And my daughter had a different experience. 90 minute appt with consultant paed who saw ASC immediately. Still, consultant psych at Camhs felt it necessary to pull me to one side during her ADOS and mutter “well she is adopted, you know”. A lack of professional curiosity and too willing to diagnose status rather than presenting behaviour.

Always dig deeper. Not just birth parents but go further back. Read between the lines. Where there’s drugs there’s likely to be alcohol even if not states. Rarely just one drug in the mix. And, as you say, why self medicate? What’s underlying. Our children often come from dysfunctional birth families - where no-one has thought to refer, to assess, to diagnose .. just to firefight.

Ultimately our children are complex and there’s rarely just the one issue in the mix. I guess we’re fortunate because my youngest two were dx early enough to be able to benefit from an appropriate and positive education. Middly off to college in September pre hopefully uni, daughter also off to a different college. She has a different pathway ahead of her but has had a positive education experience. That makes so much difference.

Be curious. Trust your instinct. Know that you know your child best. You are the expert, you are their advocate. I think I’m fairly well known now in my kids school (and by our LA!) and I am listened to and consulted. But it hasn’t always been this way.

We’ve no ASF here anyway but I’ve accessed some training for me - mostly for the charity I now volunteer for. NVR, Teen Life, and lots of other stuff.

Furcifer, I’m happy that you got the diagnosis. Knowledge is power. And knowing what you’re dealing with helps you to adapt your parenting. There’s a place for therapeutic parenting absolutely but there are also other strategies which are appropriate. And parenting a PDA child means altering expectations, the way you parent, lowering demands (understanding that what you see as a request, your child will interpret as an overwhelming, anxiety inducing demand). A learning curve.

Good luck xx

Hey - congratulations Furcifer. That sounds like good news.

FWIW we are currently having a positive experience of therapy with a well qualified practitioner via ASF. Younger daughter also has a diagnosis of ASD and we are able to acknowledge that ASD and trauma are both present.

The ASF process is tortuous though - I could rant for a long time about privatisation. Constant rounds of funding applications rather than properly resourced health and mental health services. Aaargh.

Also FWIW, ASD diagnosis came because an experienced EdPsych signposted it heavily. We had already been dismissed by an inseffectual community paed whose reasons for doing so I later realised were superficial and commonly a barrier to girls getting diagnosed (she has friends...)

I do often wonder whether she would have that diagnosis has she been coping academically and not seen the EdPsych. It's such a lottery!

Ps In other people's experience, does the diagnosis come with any support from the NHS team? I have been quite ground down by the practice here which is to diagnose then immediately discharge with signposting to third sector organisations (go phone a helpline). I dream of a world in which diagnosis comes with some sort of holistic, integrated support (eg, OT/dietician; speech and language therapy)

In my experience - that’s with myself and also my daughters experience with her kids - no support - you have to look for it - there may be groups for kids if you’re lucky. My grandson was diagnosed at 4 - she assumed there’d be lots of supports afterwards but there wasn’t although of course it fed into his EHCP. ADHD support seems to be better organised - particularly for parents - but do ask everyone you come across. This applies even to adults - the person who did the ASD assessment for my youngest daughter which was an adult service - thankfully free and self referral and quick - left for another borough which did have post diagnostic support (ours doesn’t) though there is a voluntary social group and the woman running it is supportive. I think you’re right - I also got the impression their motivation is to NOT progress anything

In my experience, no. First diagnosis we were given a booklet; second diagnosis nothing. Support has come through getting the right school and a local charity which offers training for parents. Other than that, you’re on your own

In reality it’s the report itself that is useful as it lays out your child’s needs and is written by a professional. So is not just Mum’s views. A diagnosis is also a shorthand that can help others who are familiar with the traits understand. Then you have to use the information you have to get the help you need for your child. You do need to do a lot of research on what’s available / possible. But it also helps you in adjusting your own expectations and ways you handle your child. There are lots of really good books and information online as well as in the AUK archives - that’s where I got most of my information (and therefore help) from. Don’t forget to look at specialist organisations that support the particular diagnoses you are looking at. Of course often much of the research is done before you get the diagnosis as it’s what spurs you on to fight for it - but there’s always more to learn!

@Lilythepink, (a very outing post, but this stuff is important), my daughter is that mythical unicorn: a child who has neo-natal abstinence syndrome, is registered blind due to her in utero drug exposure, is now diagnosed with ADHD and is awaiting an ASC assessment (suspected PDA profile) - but she is achieving well at a super-selective grammar school. For 13 years she has managed to mask the real issues, and school/s liked to think of themselves as her ‘safe places’ 🙄. It was only when the wheels started to come off in Y9 (important GCSE options year) and the Mount Etna who lives in my house also began to erupt and seep molten lava in the classroom on a daily basis that school realised there actually was an issue. Cue them throwing money at the psychotherapist and the private ADHD diagnosing company.

In answer to your question, no, there has been no additional support for my daughter. I have to pay £134 every three weeks for her private ADHD meds (we are very far from being rich). My child does not even have an EHCP. I think I need Donatella and Safia to come and live in my house; I am just weary of everything being so difficult on Planet Adoption.

Have you checked the prices in different chemists for the meds - I’m sure you probably have - but they do vary. We get ours from Tescos which is the cheapest here - and also most convenient fortunately - works out about £80 every 4 weeks. My daughter has PIP so this is one thing it goes towards

Furcifer,

Can I ask why you are having to pay for her Meds? We see a private psychiatrist for my ad's ADHD but her meds are prescribed by her GP and so we get them on the NHS. The psychiatrist and the GP have a shared treatment agreement - we go and see him at least once a year and he monitors her on the Meds and then writes to GP telling them that either everything fine or to increase meds and GP issue prescriptions.

I thought I would mention this incase it helps. My daughter is on elvanse and intuniv.

Best wishes xxx

Hi Furcifer - I remember your daughter's situation from a previous post. The EHCP system in this country is so truly broken, as we all know.

Can't say much now but I'm steeling myself for a round of (private) assessments that the school and LA know she needs but won't provide (and NHS waiting lists) and a tribunal, for which I'll probably pay out more ££ for legal representation just so I don't [insert swear words liberally] have a breakdown or throttle someone from the LA. And this is for learning difficulties which are evident to all and have been described in EdPsych reports twice.

Strength to you. It is exhausting.