Im an Autism and ADHD Assessor - AMA

[magictits]

I get heaps of questions about this IRL so thought I would post here and answer any questions in case they are helpful to anyone.

I'm really confused because my nephew has been assessed for ADHD privately and they said he's got it. But my sister in law told me they just had a zoom meeting where they talked, answered some questions. They'd already filled in some forms. School gave them nothing though although she did say she got some support on the forms from his swimming teacher.

Is it all done in day like this with the NHS? Or is it just over with in a few hours cos it's private? And did they not do tests and things cos it was done privately? Or does it just depend on which clinician you've managed to get?

Also if school don't back you ie say she's ok, how badly will that affect the assessment? Will they just say no we're not going to assess? Or will they still do it?

And yet the person who diagnosed me via NHS RTC is a consultant NHS psychiatrist.... Who does RTc in his spare time as he cannot see/help enough patients via direct NHS...

Soooo does that mean if I had waited 10 years for the NHS assessment (as my best friend just has) and it was carried out by that exact same NHS consultant psychiatrist....you'd say it was valid...but the exact same consultant psychiatrist doing the same assessment via RTC...is somehow...not valid?

Also if these are all "cowboy" companies why is it that certain NHS areas such as Kent and Medway, who do not have their own neurodiversity department directly refer all NHS patients to be assessed via NHS by Psychiatry UK (the same company I used for RTC). If they aren't providing a valid NICE assessment and therefore providing a valid diagnosis why are the NHS using them as their ACTUAL NHS service in places where no current NHS service exists?

I get loads of questions about this IRL, so I thought I’d post my personal experience with an ADHD certify assessment in case it helps anyone.

I get asked a lot of questions about this in real life, so I thought I’d share here. I have ADHD and went through a "Adhd Certify assessment". The experience was really positive and helped me understand myself and my needs much better. Happy to answer any questions if it helps.

On masking, I wonder if the confusion is because lots of undiagnosed ASD runs in families? I was taught by my DM very specifically and repeatedly how to navigate social situations, because I wasn’t very good at it. Neither of us has a diagnosis, but she had clear expectations about asking questions / listening and being the right amount of chatty, circulating around the room, preparing beforehand so I knew who would there and when / where I’d had met them before and what we’d talked about then so I had a starting point for conversation. And that was just the tip of the iceberg, lots more too.

I’ve taught all this to my DC, including practising conversations in advance when they were nervous. One is diagnosed as ND, and when they were assessed it was clear to me that the assessor thought that some things were signs of ND, even thought we thought were entirely normal for us as a family.

So when you say masking is just for ND people, I wonder if you think there’s an awful lot of people out there doing something very similar to masking, or whether you think it’s something by definition only ND people do and anyone doing it is just undiagnosed?

@BlackberryAppleCrumble lots of the things ND people do are also things the wider population do, as we are all human, but ND people do them to a much greater extent and for different reasons than NT people.
As an analogy, everyone uses their left hand for something, eg when they have something in their right hand already or if it’s more convenient.
This doesn’t mean everyone is left-handed, or that things that support left-handers in society are unnecessary. Left-handers will use their left hand the vast majority of the time and when it is a bit inconvenient to do so, and can force themselves to appear right-handed under social pressure though it causes pain and fatigue to act so unnaturally for any length of time.
So it is with Neurodivergence.

This is quite interesting. My teen daughter has quite a lot of sensory issues. School suggested that if she was assessed for autism she’d get support. So we agreed.

I was contacted by someone who introduced herself as an autism nurse who arranged for a trainee autism nurse to ring me for an interview. This lasted about an hour. Completed the questionnaire they sent which really didn’t much relate to my daughter’s issues.

Daughter had a meeting with the nurse for 40 minutes which my daughter described as very bizarre and patronising being asked to do tasks that were more suited to a child half her age. Not once was she asked about her issues.

I received a call from the nurse the following day and was told she had a diagnosis. I did laugh at this as the assessment process seemed so very inadequate. She also told me what school had highlighted- neither my daughter or I recognised what school said about her other than the sensory stuff! Also, school had never raised this with me - only the sensory issues.

Receive the report and my conversation is summarised into two thirds of a page, in which there are eight inaccuracies. Things I had never said! There were three recommendations: one of which was a reasonable adjustment I’d already fought for; one was a pass to get out of class early, which is not something she either needs or wants; and the final one was to contact a really good local charity that supports parents of children with autism - but has nothing appropriate to offer to us!

The whole report including covering letter was three and a half pages long. The whole process seemed so contrived and following a chat with someone from an autism charity, really left me wondering about the validity of the diagnosis. I’d be interested to hear @magictits thoughts?

That sounds v.v.poor. Sounds like she might have done a sketchy version of the ADOS with her. The adult version can seem like you are doing child-like tasks, but I always warn my clients of that.
A trainee nurse couldn't or shouldn't be administering an ADOS though. You have to have specialist training and there is only a few firms that run them and they want to see evidence of your registration to attend. And what should happen (in a good autism assessment) would be a developmental interview with client (up to 3 hours), one with informant (what we call the ADI-R - up to 3 hours) and an ADOS (1 hour). If you are assessing for ADHD as well then a DIVA (1.5 hours) and a Qbtest (half hour). Our reports are 50 pages long.

Was this NHS? Does it say on the report what assessment tools were used?

I have been reading this thread recently, i am interested because my 15 y/o daughter was recently diagnosed with inattentive ADHD and autism. The reason for seeking assessment was because a psychotherapist she had been seeing recommended it. We went for a private diagnosis because of the wait times - with GCSES coming up we were concerned that a long delay may impact her.

The psychotherapist gave us a list of about 6 and we chose one and went with them. As part of the assessment my daughter was seen in clinic twice, we did an online history that took about 90 minutes and completed forms and the school completed forms. The psychotherapist also submitted her observations after the assessor invited her observations. The report says that the following criteria were used:

Developmental History
ADOS 2 assessment
Standardised measures completed by school and parents
SNAP IV ADHD screening tool
QB check computerised assessment
ADI-R and DIVA informed clinical interview
MDT with chartered clinical psychologist and SALT - both HCPC registered/licensed.

The report says that everything was carried out in accordance with NICE guidelines and using DSM-V and ICD 10 diagnostic manuals. We got the 22 page report and diagnosis about 5 weeks after the assessments were carried out.

The issue that we have is that the school SENCO is saying that they are unable to accept the diagnosis/report because it is not NHS.

The clinic does do NHS assesements but not for our area.

Do you have any thoughts on this? It is all very stressful.

Not all private assessment companies conduct assessments that meet NICE guidelines. This is why the NHS will only fund certain ADHD private diagnosis. When my son went through ASD and ADHD assessment with the NHS it was a lengthy and detailed assessment. They had 3 specialists involved, assessments from his nursery, school and health visitor. A detailed observation conducted face to face and then further observations for ADHD in school. All this was face to face.

Wonderful thread and thank you so much for starting it op. Luckily people like Hobbiestwriter are becoming the exception with their old fashioned views of neurodivergence and over reliance on a purely medical model - it actually makes her look fairly silly on here when surrounded by lived experience and your incredible knowledge on the subject.

As someone who has a son with a very externalised expression of combined type adhd and a newly diagnosed auDHD (inattentive type) 20yr old son who has had a mental health crisis brought about by being undiagnosed, I just want to thank you for raising awareness of different presentations.

I know ADOS was on the report. I’ve filed it away as essentially it’s useless! It was NHS. No ADHD assessment required. The trainee did the developmental interview with me, and she was in with the other nurse when they assessed my daughter for 40 minutes. I got amends made to the developmental bit of the report although they did leave in a sentence about her ‘special interest’ - they literally took one of her hobbies and interests and called it a special interest 🤣🤣 We disputed what school had said about her and they went back for further information from school, which school failed to provide. My daughter’s had no involvement with any other clinician or health care professional as she hasn’t needed it. We hoped to get some sensory integration therapy, but this isn’t available. Fortunately, with the minor reasonable adjustment I got in place for her, she can manage her sensory processing issues herself now as she’s of an age and confident enough to do so now whereas in Y7 she wasn’t.

Oh, and we did subsequently have a private OT assessment for her sensory issues - mostly to prove to school that she wasn’t making this up, and then moving to sixth form would be easier. That was a more thorough assessment, more appropriate to her age and needs, more observation. She felt validated after that. Her words after the autism one were that she felt belittled.

That list looks good and robust. Similar to ours. Only bit Im confused on is it doesnt sound like you were interviewed, just your daughter, so how did they do an ADI-R? Thats an informant interview and can take up to 3 hours. Sounds like they did it by questionnaire which isn't how its designed and wouldn't meet NICE guidelines. Or did you mean by 'online history' that they asked you questions and you answered - by which that would be the ADI-R.

Sounds like thy have done everything right, but some bodies won't accept private assessments. You can push and show them the list of what it includes, which meets NICE guidelines (many private dont) and see what htey say.

I'm a Chartered psychologist (PhD) who works with autistic adults. I'm not a Clinical Psychologist so I can't diagnose autism. I recently did the ACAI training course. I paid for it myself because I wanted to know more about it. Do you know if I could find work carrying out ACAI interviews? (with a reputable/good organisation?) I do understand that my report would feed into the MD team

Yes we did an interview as well - our interview was online and is the history that I was referring to. The questionnaires were in addition to the online interview. we could have gone to the clinic for that part if we wanted to as well but as we were so far away we opted for the online interview. It could have been longer than 90 minutes - I can't remember exactly now but it was detailed and went into everything from pre birth, the birth and all up to present day.

Our daughter was seen in clinic, twice.

Well it sounds like youve had a good assessment @hopeidontforgetthisusername . I would send the SENCO the list of what it includes and that it meets NICE guidelines and ask her why she won't accept it?

This shows the nonsense of it all. Your daughters assessment was NHS, yet the ADOS was done by someone unqualified, and sounds pretty shoddy.

@hopeidontforgetthisusername has a really robust report but the school wont accept because its 'not NHS'.

Daft.

@hopeidontforgetthisusername you can fight it because they are supposed to consider a private assessment. Private ASD Assessment Diagnosis: Will Your Child's School Accept It

Thank you so much for responding with so much detail, it's really helpful. I have complete faith in the clinic and staff but it has been so disheartening to be treated so badly by the school - they have made us feel as though we have just sought to 'buy' a diagnosis.

We will keep fighting it and appreciate the resources you have indicated.

Thanks. I’ve had reservations about the process since it happened and I think you’ve confirmed I was correct! Thank you. Really helps.

Your most welcome @SeriousTissues and @hopeidontforgetthisusername .

Hi. I mean this question with all respect, and hope it doesn’t offend anyone.
How much of this massive increase in people seeking diagnosis for ADHD do you think is actually due to changes in society causing a difference in how people function? For example, we are so used to short bursts of media (eg TikTok videos) and having everything at our fingertips (eg 24/7 access to all sorts of media), that of course it means people are becoming less used to having to focus and wait for things.

@SeriousTissues was it the nurse or trainee nurse who did the ADOs with your daughter?