I run an ADHD/ASD assessment service

[Trolleydolly123]

As the title says, curious to hear questions/thoughts.

I think this is interesting. Can you share the link if you still have it?

both my girls are diagnosed with ADHD and they have very obvious behaviours so a no-brainer. And I have many of the behaviours but I’ve ‘managed’ well and I’m good at disciplining myself and I have largely been successful without any awareness/diagnosis/support.

I have wondered if I have done something/not that has made their symptoms worse than me.

When you say “stimulant seeking behaviour” do you mean people wanting to access meds? As a parent currently supporting an adult child to access meds following a cross-country relocation, there are much easier and cheaper ways to access stimulants! DD has been under NHS care for years but her new health authority won’t continue her treatment. We have had to go through the whole diagnosis process privately, including blood tests, ecg and its cost over £1200 so far. If she wanted stimulants she could buy them at the pub on her road with a lot less effort and a lot less hassle. I expect the supply would be more reliable too.

I thought that may be the case. Some areas dont diagnose before 3 in clear cases (with LD) or 6, or even older in some areas. Its due to the symptoms often being consistent with what is also in the developmentally typical range. So basically you have to wait for the child to develop further and see if they meet milestones, develop more skills in areas of deficits etc. The adverse outcome of assessing 2 year olds would be a range of kids being diagnosed with ASD who at age of 6 are actually typical of their peers. Although when its clear to see there is 'something going on', the wait is frustrating.
Think of it as what would you do if he was diagnosed tomorrow, how would you treat him and how would you parent, just do that now. Think of a needs basis rather than a label at this age, review again at school age and push if needed.

Yes that is true. We do see it though.

Neither have changed how they outwardly deal with the world - same relationships, interests, jobs. My friend with ADHD isn't taking any medication.

Both feel they understand themselves more, and look at their childhoods differently now, which is positive. But when resources for diagnosis and supports are so limited, and early intervention can make a big difference to children, I think that kids should be prioritised for diagnosis.

Agree with this.

I dont work with kids so dont know about the youngest.
Most common age to assess is 6 and over, due to them beimg pretty much developed at that point in terms of milestones etc.
I know of kids diagnosed at 2 and now at 8 they have profound LD, non verbal, incontinent, global delay etc. So i think when 2 year olds are being diagnosed, its the most severe level of impairment and most obvious.

OP is making a lot of comments about children for someone who doesn't work with children. Her expert opinion is on adults.

My local area decided to focus on assessing the younger children and not assess anyone older than about 9 or 10 I think. For years we had been fobbed off about ds2, saying he couldn't have autism because he has friends, it must be sensory processing disorder. Anyway when ds2 started secondary school it became clear that he was autistic. He was assessed by Camhs who said he was obviously autistic but they couldn't diagnose him. When the rules changed again ds2's referral was the first to be sent off by the school. He is now nearly 17 and really struggling. He is in the process of being assessed now but it's taking twice as long because they want information about his whole life since I was pregnant with him. So we keep getting told that our appointment time is over but they have only asked us a quarter or half the questions. So we have to wait another 6-8 weeks to see them again. So no, I don't think it's a good idea to not assess adults.

It seems like it has made a difference then, in terms of mental and emotional health. I think often that adults now, whose reality was unseen during childhood have learned to mask their way through life, which long term is very detrimental. I personally think adults and children need equal access to services, but for different reasons.

RTC - based on my observations and experience
So this is a GP (nhs) funded provision, someone can ask for referral for asd/adhd via either NHS provision, or the Right to Choose Pathway.
The NHS provision provides a robust assessment of either, sometimes with meds for ADHD, which GPs will take over prescribing under a shared care agreement. NHS assessment is near enough a gold standard, rigourous and evidence based, but there are long (years+++) wait for this. Capacity exceed resource in all parts of the UK.

RTC is an assessment provided by a private company, paid for by the NHS. You can have one or the other,not both.
These are conducted by companies who charge varying prices and carry out assessments in a target driven way. What we see coming through us are assessments which are often poor quality, short in time and not robust. There is a commonly held view with RTC that you pay for the diagnosis, and will usually get one. However i am sure that there is a lot of good done in this area too, but its a booming and quite unregulated industry.

Private - so you could pay a private RTC company for the above.
Or you could pay a reputable private assessor/Dr, usually an NHS clinician working privately, and receive an NHS level quality assessment through private practise.

Its a very confusing minefield.

I do think those who can afford to pay for assessments should be doing so, even if that means saving up for one over a long period, but I also think it can be life changing for adults who have 'coped' their whole lives, regardless of the position they have managed to get to, to receive their diagnosis.

It is exhausting to have spent decades masking and struggling with misdiagnosed OCD/anxiety etc when the whole time there has been an over-riding reason for it all.

Knowing that there is a reason for the issues you've battled your whole life is incredibly freeing and powerful.

@CherryBlossom321 agree completely. The difference it has made to me has been ubelievable already. In terms of quality of life, ability to access work and effects on family so again affecting my children's life experiences and chances.

However if you asked someone who didn't know me well (even most of my extended famiky/some friends/most colleagues) they'd go along with the daily mail version that I must have "bought a diagnosis" (I didn't) and that it was a waste of resources.

Both adult and child services need far more investment than they currently have. Maybe funding the R2C companies to extend further or take more on to get through the backlog.

I work with many families whose kids are awaiting an assessment. The whole set up is shocking. Especially in situations like @elliejjtiny .

We know from listening to autistic voices what a difference going through school, secondary in particular, knowing why your brain functions differently can have. I've seen it in my children. Again their experience will probably be dismissed my many as not having high care needs yet for them it's made such a difference.

MH wise eldest struggled a lot and framing it within context of autism made sense to her. Friendship wise her friends "get" why she might be blunt sometimes and she has a great group of friends. Soemthing I never thought would happen. School wise she has accommodations and the teachers are very clued up in terms of explaining a task or if she's got anxious about something that seems small. She will hopefully do A levels and Uni and her story could have been so different if she hadn't been supported and understood by family and school. If you are still wondering "if" your child is autistic it's such a weird limbo. Yes apply the strategies regardless and yes school provision is supposed to be needs based not diagnosis based but in all honesty having the diagnosis makes a huge difference. Not least to the child themselves.

We know from adult autistic voices the diference understanding can make and the importance of early diagnosis.

We know from so many studies that children's wellbeing can affect life chances. Struggling being autistic in a NT world is tough. Knowing what is going on makes it so much easier.

My favourite place for user friendly resources is Neurowilde. If you Google Neurowilde and just click images you'll see she's drawn so many. She has ideas around explaining autism, around telling your child, around accommodations in school and just so many of the "ah that makes sense now" moments in understanding how autistic brains can work. She is super neuroaffirmingwhich makes such a difference too in the way we talk about autism and present it to our kids.

Its truly criminal that so many children are slipping through the net. Yes we need support for those with high care needs, and correct diagnosis and intervention.

But assessment and diagnosis for those who perhaps don't have the high care is also important. So many children are slipping through the net and the rate of ND kids not in school or being failed by our education system is just ever increasing.

My assessment is in a few weeks After waiting 2 years.
Is the assessment all questions or will there be more online form filling.
I'm 58 and requested a referral after my constant talking has got me disliked in the workplace.
All my life it has been mentioned often in a light-hearted way.
Now I realise I do everything a million miles per hour even talk.
Did I slip through the net as I'm female as I've had hideous anxiety and bouts of depression since my 20s.

I know loads of middle aged women running around with ADHD.
All undiagnosed.

What are your key signs of ADHD in women over 50?

It’s so utterly frustrating as I feel completely trapped. Wanted an NHS diagnosis for DS but would have taken 4 years, by which time he’d be in the height of his teen years and starting GCSEs, so much damage likely already done. Didn’t do the private route because was told many institutions would ignore the diagnosis or GPs wouldn’t share care, so went though RTC, got the diagnosis, and now often read online that it doesn’t count because it’s not a ‘proper’ NHS diagnosis, people say it’s over diagnosed bla bla bla.

He has ADHD and autism, it’s obvious, medication is helping. But I hate to think his diagnosis will be dismissed because it’s RTC, what other choice did we reasonably have?

I dont think in the areas where it matters (school, college,uni, student finance, work) a RTC diagnosis is seen as a negative or less proper. Good he has one and meds are helping in time for GCSEs

Its really different for everyone, i think there are likely lots of people in their 30/40/50s and beyond undiagnosed as it just wasnt recognised in the same way before. I also think there are lots of people running around self diagnosing, which is fine as anyone can identify as what they wish. I do think there is a spike in presentation postnatally often due to sensory overload, and also around menopause.
I also feel that again parenting styles up until the 80s and 90s where very different to now,with a lot more leaving to cry, lack of attunement/attachment, lack of knowledge around emotional development etc which could also be a contributing factor to how it manifests in these age groups.

Thats a very short wait time, although im sure doesnt feel like it.
The assessments for adhd and asd are different, adhd often quicker and shorter. Asd often done over a number of sessions with varying components. Also depends on any other health issues.
Every area would be slightly different but i wouldnt think there would be anything to fill out such as forms. Sometimes its face to face,sometimes virtual.

I have worked with children and families in other roles in the past, just not now, and work closely with camhs for those transitioning into adult services. I dont suggest I am an expert, but I know what I know.

I think on "AMA" you set yourself up as an expert by the very nature of it. Rather than it just being another opinion amongst the rest.

Think a lot of people saw how their kids were doing/not doing/really struggling with homeschool work and realised something was going on that was hidden or ignored in school.
Or had time off from masking at work and realised same for themselves

Yes agree, also spending lots of time indoors/isolated was hideous for some, brilliant for others which maybe highlighted things.

It might be helpful to ask ahead what they want to know in terms of development, so you can maybe not run out of time.
CAMHs should finish the assessment as they started it (thats the rules in my area) just check so you dont get caught up in him turning 18,the assessment being incomplete then him joining the back of a really long adult wait list.

You haven't answered my question.