AIBU about how this autistic/ADHD parent manages symptoms around their children.

[Flamingmango]

Someone in my family has been recently diagnosed with ADHD (privately in UK) and believe they also have autism, I'm not sure they are seeking a diagnosis for that. They have two young children, a 3 year old and a 6 year old.

I'm struggling with some behaviour they do that they excuse with the ND, like, at meal tables watching a video on their phone with earphones and one of their children trying to talk to them, they'll ignore them or say "I told you I'm watching something". And being very intense about the kids always having to be quiet or other stuff which I consider expecting the children to be responsible for the parent's triggers. They complain about these children so much and seem to think they are very difficult but I honestly find them incredibly delightful typical kids (I do also consider them a little overmanaged).

I understand the need to regulate if not coping, for example, if a parent told me their ND kid gets time on their tablet at the table or whatever to regulate to get through meal times then I would understand that. But when you are a neurodivergent parent, I think you need to be finding ways for you to manage your symptoms without hindering your kids and also maybe also adhering to social norms/rudeness (this happens at family meals and events too? Is that unfair? I'm genuinely worried I'm being ableist I guess. Would love to hear from other ND parents.

You say nobody should have to wait as long as they do for a diagnosis, which can be up to 6 years in some areas. Why do you think this is? An explosion in waiting lists, numbers have increased 7fold in just the last 6 years. Staff able to perform the assessments have not increased at the same rate because a, there aren't the numbers of qualified clinicians available and b, there isn't the money available within each Trust.
Waiting lists for MH conditions have risen at an extraordinary rate over the last decade and there has to be priorities over which services get more funding than others. Society is label led now and for a lot of adults who seek a diagnosis in later life it's just that, to have that label.

I haven't ignored anything. This is one of the few studies done in the area and clearly states concerns about the robustness of diagnoses to be an issue. I never said it was a large scale study but in the absence of a more comprehensive study which you haven't been able to provide then it's the best we have.

Amongst other issues it’s because of Covid backlog , funding and an increase in knowledge of how it presents in women’s and girls.

Or should women and girls just not get diagnosed?

35 questionnaires!🤣

I think adult autism diagnosis are ridiculous TBH and that person is looking for attention or to excuse poor behaviour. What’s the point as an adult - you’ve got this far in life

Bullshit! When you have struggled with impulsive and dangerous behaviour, suicidal idealisation, self harm, self medication, massively impacted education and career ….come back and declare it’s just to get a label.

Oh the ignorance!

Is the 'crappy science' the science that doesn't agree with you? You use a lot of emotive language and I can understand that this is deeply personal to you but it doesn't do anyone any favours to allow false certainty to grow in this area. There is so much about so many of these ND conditions that we don't understand. What causes them? How to definitively test for them? Where the threshold for ND and NT actually is and whether a stalk difference between the two actually exists at all? Whether severe forms of these conditions are actually the same thing as milder forms that we currently put under one umbrella?

Again you’re confusing assessment and diagnosis- the assessment might not be robust enough. A diagnosis is yes or no. Private clinics have to follow certain guidelines, several different clinicians and professionals have to be in agreement and a lot of evidence of the condition over years is required. You’re repeating a baseless and harmful narrative that undermines people’s struggles and experiences. And, quite frankly, you’re prejudiced. You cannot know what went on behind every single person’s assessment but you’re happy to declare their diagnosis as “not robust”.

To my knowledge this is the only study done in the area. You don't seem to be able to link to any research that contradicts this. Also, another poster has already anecdotally referred to a GP they know that is sceptical about ADHD diagnoses.

I wish you'd learn to read, I said "a lot of adults", not all adults. A lot of later in life diagnosed adults, their lives do not change one iota after having a diagnosis, no medication, no therapies, but they have that diagnosis which to them is a label. Is it cost effective for the NHS to diagnose people in their 50s and 60s or could that money and clinician time be put to better use?

There is no mild form of autism. It needs to have a detrimental impact on life to reach the diagnosis threshold.

I'm not but thanks

Again you are wrong. Mild autism is defined as being ASD Level 1. As it is a spectrum then you are obviously going to have mild, moderate and severe cases. Mild just means they require minimal support compared to the other categories

Your data for this?

I am one such adult who chose not to have the meds the nhs offered but the psychological and hugely successful managing treatment they offer as an alternative. It has been life changing and I’m as deserving as my children not least because my MH and struggles matter and I’m also having to support struggling children with both conditions.

The nhs flagged up my adhd when they did my autism assessment which is common.

The diagnosis isn't just plucked out of thin air and totally independent of the assessment. If the assessment isn't robust then the certainty of the diagnosis decreases.

If you sat an exam that had a 100% pass rate would this set alarm bells off for you about the value and robustness of the qualification at the end of the course?

I know the assessment process well and it absolutely isn't as objective and scientific as you suggest and relies hugely on patient testimony and self perception. You also don't need the comprehensive body of evidence that you suggest.

No that is level 1 support needs in one form of diagnosis which it makes clear can fluctuate throughout life. An autism diagnosis focuses on several areas,need can also vary amongst these areas hence putting levels on autism being impossible

Yes it does, when in the right hands. But diagnosis is an art not a science especially when it comes to neurodevelopmental disorders. You might get one answer from one clinician and a different one from another.

No. She struggles with noise but she could be wearing ear plugs - no need to be watching a video ffs.

Im guessing before her diagnosis she was able to eat dinner without a video and ignoring her young kids?!

The world has gone mad. If she can’t cope with being an active and attentive parent then she needs to get more help with that. A 3 year old needs attention when eating.

Quite frankly the suggestion that women and girls should suck up decades of sexist diagnosis practise and go without is pretty appalling.

I was taking more broadly about ND conditions but I think even with autism you know exactly what I mean. A non verbal, non continent person with autism is impacted very differently than someone with what would have historically been diagnosed as Aspergers. Are they definitely both experiencing what we currently understand to be Autism? That's where some uncertainty lies.

No I don’t because learning disabilities are separate to autism and to get an autism diagnosis it needs to have had a significant impact on life. Nothing about it is mild.

There isn’t 100% “pass” rate. You do need evidence. You cannot buy a diagnosis. You can only buy an assessment.
I am sick of hearing ND people being told they’re not ND by people who make huge sweeping statements about assessment procedures. I am sick of the gaslighting, the minimising and downright denial of ND people’s experiences.

You can have non verbal autism.

The term “mild” downplays the severity of the difficulties an autistic person faces. Yes there are different levels of support required but mild, moderate, severe/ profound should be dropped