ADHD: Private clinics exposed by BBC undercover investigation

Thank you.

That's really helpful and interesting.

My mum hardly ever slept.

When I was a child I was the only one I knew whose mother went to bed at 2am (apart from my sisters ).

As an older person, she wouldn't go to bed at all so just stayed in the armchair.

She had a lot of delusions and paranoid behaviour throughout my life, but no hallucinations as far as I know.

I find myself thinking a lot about my mum after her death, trying to understand her.

She didn't really know anyone outside of the family, distrusted everyone and especially medical intervention.

It's good that your husband's condition is recognised and that the meds help to a degree.

My husband has schizoaffective disorder. He is on quite a low dose of meds, but when he tried coming off them he had a breakdown due to not sleeping. Even on his meds he can be a bit paranoid and have hallucinations. He does have some traits in common with autism and scores borderline on several autism tests (lower than my scores), he failed the reading the mind in the eyes test, but his disorder is known to have some overlaps, especially in eye contact and social interactions, so I don't know if he has any autism or not. But the paranoia and hallucinations are I think more diagnostic for the schizo-spectrum. I don't know nearly as much about his spectrum as I need to, it seems harder to find info on it than on autism or ADHD. I don't know if any of this helps you understand your mother better. I think it would be more difficult to fly under the radar with a schizoid condition than with autism, but my sample is only one person, albeit one who seems to have it relatively mildly.

yeah its very well known that adhd has been massively wrongly diagnosed.

i noticed this ages ago that they was handing out adhd diagnosis to every single child in school... which is easy to do, children are hyperactive and energetic... this is not adhd this is kids being kids. o when you try diagnose a kid it will always match adhd because a kid is hyperactive and fidgety and energetic, that is not adhd though that is just kids being kids... that i normal.... and so there was a time they made this mistake and gave this diagnosis to every single child in school to the point everyone was talking about it and you didnt know a single parent who didnt have a kid without adhd lol

Thanks to everyone who replied to this thread.

What occurred with the clinic who gave me my diagnosis has obviously been unsettling but, despite some setbacks in my faith in the diagnosis, reassurances here, plus going back over the paperwork I completed and my report,  have helped me a great deal.

Autism fits so neatly into my essential self and the challenges I've faced in life, that I think it's correct.

Thank you Martin.

Martin said:

imagine that you gave an extensive written history of your traits and experiences, that whoever diagnosed you would have read. This, for adults, is a far more accurate way of assessing autism than any amount of testing or observation.

Yes, that is so.

The second assessment was with a Consultant Psychiatrist.

battybats said:

I think that as long as a knowledgeable assessor has been able to observe you and hear about how you experience the world, that's the most important thing. It sounds like you did actually provide a lot of information, which suggests that things were sufficiently thorough for a valid diagnosis.

Thank you.

This is reassuring.

Yes, I've gone back over the paperwork I was sent and this consists of the RAADS, an Autism Spectrum Rating Scale, Mental State Examination, Neurodevelopmental Questionnaire, Beck Anxiety Inventory and Beck Depression Inventory.

My second assessment was with a Consultant Psychiatrist.

You wouldn't necessarily need things like old school reports or input from family members. I didn't, because I was able to provide lots of information about my own experiences, and I'm fairly high-masking so input from other people wouldn't really be helpful anyway.

My appointments lasted a total of six hours, though this did include the RAADS-R questionnaire and a family history, both of which could be done on your own. The other appointment was two hours, so about the same as yours were in total.

I think that as long as a knowledgeable assessor has been able to observe you and hear about how you experience the world, that's the most important thing. It sounds like you did actually provide a lot of information, which suggests that things were sufficiently thorough for a valid diagnosis.

This is shocking and upsetting. I can't say I'm surprised but it is shocking to hear.

More of the AuDHD+OCD iceberg:
I had to force myself into bed at 7pm to make sure I atleats got 6 hours of sleep after struggling to to for a few hours, and now I'm awake (woke up at 3:30 AM, because I need to be ready to go to appointment at 10AM today...... So now I have to have brunch at 8AM and hope to lunch in 11am-1pm and have an early dinner and then maybe a supper later on if I don't just go nonverbal and crawl into bed at 9PM which would be the smart thingh...but I know despite putting time stamps on all my plans I will be lucky if Ican be on time to even one of them. 

I'm %100 I'm AuDHD though even tho awaiting diagnosis, many things I do/happen to me can't be ascribed to ASC alone, and I was assessed correctly with as autistic and having OCD as a child back in the dark ages of classic autistic criteria. I never thought ADHD could be there only because I was told back then you could only be one or the other but now we know that's not the case.
I missed a deadline I was told repeatedly was coiming up last week because I never got the alarm from my phone, because I had walked upstairs with my phone, put it down then went to do something else and forgot it even existed for 3 days whilst the battery life on it slowly died. I got an email through my work laptop saying why didn't I turn X Y and Z in, I then had to ask for an extension which luckily I got, I said I'd lost my phone (not really lost thugh I did then spend a full day after panic searching for it around teh house because I couldn't remember where I put it down). Only to later find for reasosn unknown I had left my phone just around the corner of the bathroom doorway in the hall up against the wall, near the clean laundry basket. Which apparently despite putting my phone down to have a spar hand free still didn't get around to putting it's contents away now 4 days later.
I also had many times where I just forgot I even had a phone and had to fin it in the campus lost and found a few times.... thank goodness my fellow students are an honest bunch and not a load of tea leaves.
And that's just %1 of the top of the iceberg than makes me feel I'm ADHD, another %3 is I noticed on better days with my ocd and autisstic lens I get even more impulsive and innatentive, so Autism is literally hiding some of it and the anxiety of OCD and GAD has been silently keeping me remembering to lock my front door and not allowing me to be as forgetful from the sheer anxiety of "must not lose A / must get B done or else it will all go to heck" as much as I could be because when I think about it I also fit ADHD criteria to the letter as a kid before I started mentally wrappping myself wih "sticky tape" to "hold it together" with aquired anxieties and trauma. Kinda sucks knowing I'm just barely being held together by anxiety tape.

Not necessarily. It depends on the quals and professionalism of the assessors. It's not for me to say what did or did not happen for you.

But an autism or ADHD assessment does need depth and a readiness to find objective truth, whatever that maybe.

Whilst there are legitimate questions about some private assessors and indeed some NHS ones, there are also good ones too. 

Kind of whilst I thought that program did legitimately point to a scandal but failed to advise people about what the SHOULD look for in a reliable assessment.

My ASC assessment was from the NAS Lorna Wing Centre. They use the DISCO model and ADOS.

There are extensive questionnaires for patient and if possible a parent.

I dug out all my school reports etc too. I was then eith them all day.

It entirely depends on the clinical qualification and specialisms of the person or persons who diagnosed you, nothing else. As has been pointed out, extensive assessments over several days, carried out on the NHS, can still give incorrect diagnoses, if the clinicians carrying out the assessment are not fully qualified to do so, or have outdated or stereotypical ideas of what autism is. I imagine that you gave an extensive written history of your traits and experiences, that whoever diagnosed you would have read. This, for adults, is a far more accurate way of assessing autism than any amount of testing or observation.

I was privately diagnosed by a consultant psychiatrist who formerly worked for the NHS and after that was Clinical Director for Developmental Disorders for The Priory Group in the UK, I have no doubts that he was qualified to diagnose autism.

I know what you mean.

I will never know, of course

I agree, you can never know more about your mother because she has gone.  But you do know about yourself Debbie.

Please take my observations and clumsy attempts at reassurance that may have had the opposite intended effect.....and file under "R".

I say this as your friend, you are so totally valid howsoever you chose.

My feelings regarding "formal" diagnosis are pretty 'fringe' at the best of times.

I'm OK if you take me with a pinch of salt.

Number.

Dawn said:

Don't let it doubt your ASC status if you feel comfortable that it's right. Doubt only if you don't feel it genuinely fits.

That said, I'd have doubts about an assessment that took no more than an hour. Mine was a full day, following the submission of a big fat bundle of old school reports, questionnaires from my mother, my one questionnaires, old dyslexia diagnoses and MH correspondence.

They need all that to be confident in making a diagnosis in many cases. 

Hi Dawn.

I'd appreciate it if you could explain what type of cases require all the documentation you speak of above (+ a whole day assessment).

My assessment consisted of the RAADS questionnaire + some others + 2 one hour online interviews so I'm doubting now from what you say and obviously from this documentary, that these were sufficient to make a reliable diagnosis.

Thank you.

Thank you.

You are very kind.

Number said:

I would try hard not to let this dent YOUR psyche (which is defo not dependent on a piece of paper.

The trouble is that this and a recent reply to this thread have dented my confidence in my diagnosis and also made me question what it was that made my mother so 'different'.

If it wasn't autism etc then it may have been schizoaffective disorder.

I was under the impression that she was autistic but also had another condition.

I will never know, of course.

It is promising that they aren't taking this lying down.  They make sense in their rebuttal and seem to be measured, calm and reasoned.

I think, on balance, the BBC have as many questions to answer as they do on this "piece".

Panorama have done some great journalism / expose pieces in the past......but the way they have approached and presented this matter is decidedly dubious.

BBC = Questions to answer.

The clinic = Questions to answer.

Debbie = Golden!  so I would try hard not to let this dent YOUR psyche (which is defo not dependent on a piece of paper.)

Dawn said:

That said, I'd have doubts about an assessment that took no more than an hour. Mine was a full day, following the submission of a big fat bundle of old school reports, questionnaires from my mother, my one questionnaires, old dyslexia diagnoses and MH correspondence.

They need all that to be confident in making a diagnosis in many cases. 

I find that disconcerting as my ASD one was only two 1 hour sessions, the second one being with a consultant psychiatrist (online).

None of the documentation you say is needed was requested (or exists) as far as I can remember and in any case my parents are deceased.

The RAADS questionnaire I completed seems very thorough and there were a few other questionnaires to complete as well beforehand.

Would you feel that my own diagnosis is questionionable then?

Yes, I agree there needed more context.

They are right to point out this malpractice and the crisis in getting an NHS assessment which is allowing dodgy providers to survive. This is scandalous, but I think they should have given some context about how ADHD can impact on people and emphasized that there are good private practices and the right support out there too, perhaps with advice to the public in what to look for when choosing one.

Don't let it doubt your ASC status if you feel comfortable that it's right. Doubt only if you don't feel it genuinely fits.

That said, I'd have doubts about an assessment that took no more than an hour. Mine was a full day, following the submission of a big fat bundle of old school reports, questionnaires from my mother, my one questionnaires, old dyslexia diagnoses and MH correspondence.

They need all that to be confident in making a diagnosis in many cases. 

What would be a shame is if your assessors come under scrutiny now and are found wanting as that might cast a shadow over your assessment, even if the outcome was correct in your case.