Autism or a normal social faux pas

[ParentofPremie]

My DS5 is undergoing assessment for ASD and one of the questions is "does he understand different rules in different situations".

The other day he tried to cut his friends hair. The teacher told him off. He genuinely didn't understand what he'd done wrong. When I spoke to him in a calm manner later, he explained that his dad cuts his hair and he cuts his dad's hair so he genuinely wasn't sure what the problem was. We had a chat around different rules in different circumstances. He wasn't able to explain this to the teacher, perhaps because he was confused at her anger.

Is this sort of thing normal confusion? I thought "you know what, he has a point". But is this the sort of thing a "NT" child would be able to pick up?

Other things he struggles with are sayings like at preschool parents used to greet their kids with a "I missed you so much I'm going to eat you up" and he'd burst into tears. Since then he's learned that people say odd things, so when someone said "my throat is burning" he asked "what do you mean?" Rather than getting upset.

In each of these instances, I can see what he means! Until his teacher brought it up I just thought it was a normal thing for small children as they were learning about the world. But do other children pick up on nuances of human interactions more easily?

@AutismProf
All clinics aren't equal. Some diagnoses are now being given by cognitive behavioural therapists etc and screening can vary massively. 85% is astoundingly high when you think of the complexity of the area, the overlap of traits and the amount of people that could be just below threshold. Yes, I understand some of this would be weeded out in the screening stage but some clinics have a 35% conversion rate which suggests huge variance in practices.

I never suggested that those that work in autism diagnosis aren't aware of other conditions. I was suggesting that the poster that stated that all the patients in the waiting room showed unambiguous traits of autism was being a bit disingenuous. Of course there is ambiguity. Scientific understanding is still growing in this area and our understanding of autism is imperfect.

I never said that a diagnosis relied on self reporting. Please reread my post.

@Bumpitybumper I absolutely agree with you regarding the overlaps between the traits of autism and other disorders and conditions.

I'm not trying to have anything 'both ways' though: you appear to be a clinician or similar working in the field, and I am prepared to take your observations at face value. From a parent's perspective (yes, non-medically trained and self-reporting of DD1's traits), the process within the NHS does appear robust and rigorous -I can't comment on other assessment pathways as they're outwith my experience. Two truths can exist simultaneously: it is a complex area of medicine and with the knowledge and understanding currently available, clinicians working within the system are doing the best they can to provide rigorous and robust assessments and accurate diagnosis.

For the longest time, I myself doubted the need for my child to undergo an assessment for autism. In my experience as a primary school teacher over two decades, I felt there could be a myriad explanations for my child's differences and challenges. I didn't even really note them as significantly 'different' to the hundreds of children I'd taught over the years. I observed a quiet child with some processing differences and dyslexic traits. Sure, there were some idiosyncrasies in how she presented at home, but we'd become so responsive and adapted to her needs that they didn't really give much cause for concern. The biggest indicator, on reflection, should have been that DC2 was developing on a very different, much more NT trajectory and was quite startlingly different to DC1. DC1's primary school persisted; I continued to suggest a watchful waiting approach, and only eventually agreed to look at the parent reporting form after EP (to which I'd consented) suggested a referral for assessment for autism could be beneficial. The form was eye-opening: many of the experiences we took for granted when parenting DC1 were there, printed in black and white, to be 'graded' according to prevalence and severity. So yes, we 'self-reported' but only within a framework already presented: the parameters within which traits were defined were already drawn. We eventually consented to have DC1 assessed to 'put the matter to rest', and were still surprised when the diagnosis was reached. What I'm saying is that I'm not trying to 'defend' a shaky or unwarranted or 'paid-for' diagnosis by suggesting that 85% seems a reasonable rate, but rather suggest that we trust the institutions which administer referrals and assessments to be doing the best they can with the knowledge and resources they have.

Yes, but schools aren't medical professionals. They undoubtedly have observed traits that could indicate autism but as outlined previously, these could also indicate other disorders or conditions. That's the whole point of assesment.

Exactly. Thats the whole point of assessment. To look at whether other conditions or disorders can be causing the difficulties, and to determine whether the person being assessed meets the criteria for diagnosis.

Yes, so for 85% to be diagnosed following an assessment then what does this suggest?

What does it suggest to you?
You keep mentioning the 85% number, but as you said yourself, this is only at a certain number of clinics. What is the overall diagnostic rate of children who are referred?
As I said, my child was diagnosed after detailed assessment by a SALT (NHS and private), an educational psychologist and a paediatrician. That feels fairly robust to me.
The children being assessed are those who have been observed to have certain behaviours and difficulties that may be attributed to autism. A number of medical professionals then carry out a robust assessment to determine whether these children meet the diagnostic criteria for diagnosis, including whether the behaviours could be caused by other conditions or disorders. Tell me where you think this process is failing?

It actually suggests to me that schools and other educational settings are fairly clued up on the signs of autism.

And that the likelihood is that there are children with ASD who are not getting referred.

85% is insanely high. Yes, some clinics have lower rates but that doesn't increase the credibility of those running at astonishingly high rates. If the process is universally robust then this level of variance is odd at the very least. Especially considering these are all NHS clinics.

I think the process is failing because this still a big elements of subjectivity and variance involved in awarding a diagnoses and these diagnoses are then treated with the same level of certainty and reverance as diagnoses that have resulted from definitive medical tests. That of course is the nature of the beast with conditions like autism but this is undoubtedly some diagnostic creep going on with autism in particular as well as ADHD. I am certainly not alone in thinking this.

Misdiagnosis and over diagnosis are just as damaging if not more damaging than under diagnosis.

I asked upthread but may have missed your response (apologies if I have), but do you have any personal experience of the assessment/diagnostic procedure?

People could just read the post properly.

DS5 could also mean OP’s fifth son, though very unlikely I admit 😅

I do sometimes struggle when people say DD2 (or similar) and the context doesn’t make it clear whether the OP is referring to her second daughter or to her child aged two.

I think in this case it’s pretty safe to assume the child is 5.

I wasn’t suggesting that they would persist in thinking that. It was the example given to me when DS was diagnosed, I suppose because it’s something that most people would understand wouldn’t be true, but makes it really clear WHY it’s confusing.

A good example would be meet and clearance when learning to drive. If the cars are parked on the opposite side of the road and an oncoming car is approaching then it’s your right of way. However, it took a few attempts to explain that although it IS your right of way because your half of the road is clear, if there is an oncoming car, you need to wait, even though it SHOULD be your right of way.

There are nuances in every day life, some easier to navigate than others, Much depends on the level of understanding that comes from the other person in the conversation. I know enough now to know that if I’m not getting the answer I expect, that it’s probably the way I asked the question,

Sounds like my son. Someone joked with him and said he was growing so fast he would soon not able to make it through the door at home (15 y old). I spent an hour to reassure him that it was a joke and that he would always be able to come in. He's autistic with no cognitive impairment but he just takes everything literally.

You (& many others) are spectacularly missing the point. The question is not with a haircutting amongst five-year-olds is normal or not (It is) It's whether his reaction to being told off about it is normal or not or whether the other children would understand it was 'naughty' (but still did it).

@ParentofPremie his reaction to things would seem to indicate NT yes, but honestly my life would be much simpler if we all were.

There's an absolute simplicity of people saying what they mean and meaning what they say without the over faffing our (particularly British) social rules require.

But it's very hard when you're five and there are a bunch of weird rules that you know or understand very little about that don't make any sense!!!

Yes, it definitely used to be like this: the number denoting place in order of appearance in sibling group.

Having been through the torturous process to get my DC assessed for autism and ADHD, I would say that high diagnosis rates at some clinics could simply point to...drum roll...most of the patients they see having autism and/or ADHD.

The barriers to access an assessment are high in time, angst and often in money too.

By the time you get to that point, as a parent, it's generally confirming what you already know.

Absolutely this.