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?

Is he 3 or 4 ISH? We've had several hair cutting instances in our preschool of 4 year olds, but almost invariably they know they shouldn't really be doing it. Even if they are playing hair dressers so they all understand it was the wrong thing to do. Didn't stop them, but yes they got it was inappropriate in that situation

The thing is though, autism wouldn’t just be diagnosed on that basis. For an autism diagnosis, the individual must suffer difficulties in 2 key areas: reciprocal social and communication difficulties and restricted and repetitive behaviours and interests. These difficulties must ‘cause clinically significant impairment in social, occupational, or other important areas of functioning’.
Autism wouldn’t be diagnosed just because they were ‘immature and socially unaware’.

My SIL has to fully understand every rule . She has to understand and analyse why a joke is funny before she can 'get it'. She's 75 and not diagnosed. Her 2 sons are exactly like this ( mid 40s) not diagnosed. Her grandchildren (3) have all been diagnosed as Autistic.

My son's friend cut my son's hair at school when he was 5. His friend is definitely not autistic.

I know autism wouldn't be diagnosed just on this basis but OP is specifically asking about behaviour that could simply be because her DS is immature and/or socially awkward. It could also be a sign of autism. Our scientific understanding of autism isn't anywhere near as robust as most people believe and there is an element of subjectivity depending on who is doing the assessment and how they interpret what they see.

Some clinics have an 85% diagnosis rate so I think misdiagnosis is an important factor to mention on threads like this where someone is considering pursuing a diagnosis.

i would take notes of all these examples as you can bring them up in the assessment

Diagnosing autism is about finding the patterns that connect a lot of subtle examples like these. On their own they can be brushed off but they may also be part of a bigger picture if there is evidence of deficits across the triad of social, communication and flexible cognition.

The uncertainty of the diagnostic phase is really head wrecking because you’re looking at each and every little thing wondering if it’s relevant, or if you’re unintentionally creating evidence from your concerns and skewing the results (maybe not you, but I worried about this).

I found it really reassuring that the assessment team picked up on things I hadn’t noticed, and it gave me confidence that it wasn’t just a bizarre case of munchausen by proxy or a medicalisation of minor differences or harmless quirks.

It’s in no one’s interest to diagnose needlessly , if anything the threshold is too high and dc are missed. I was still a little doubtful in the early years, but when ds started to struggle in his tweens and teens, I was so grateful I wasn’t starting down a three year diagnostic journey and instead could activate the support needed.

She’s not ‘pursuing a diagnosis’, she’s having him assessed for autism. If he doesn’t have the key elements of autism, and they’re not significantly affecting his day to day life, then he won’t be diagnosed.

The overwhelming odds are that he will be diagnosed at some clinics though if only 15% of people aren't diagnosed. If you took part in any other assesment or exam with a 85% pass rate then you would would reasonably expect to be in the majority that do meet the threshold than the small minority that don't.

I am not trying to be controversial but just share an alternative view for OP. She knows her son best but it can be very hard in a world that is seeking to diagnose all difference and difficulty to know if your child is behaving within the realms of 'normal' or if there is a genuine underlying reason.

The hair cutting example isn’t great , because a lot of children do it, some much older than 5.

I’ll give you a few concrete examples of different rules in different settings that I have experienced throughout the years .

Child coming from a shoes off inside household. Couldn’t understand why shoes were on in the classroom as it’s inside and it’s where you spend a lot of time, you sit down, you eat , you play, you read etc.

Child was a grazer and some difficulties around eating so when he asked for a snack at home/felt hungry was always told yes , became very distressed when told no at school. This eventually became a reasonable adjustment for them.

Child insisting any game that had slightly different rules to what they were used to was wrong and/or cheating.

Child telling other children off in their homes if they “ broke” the rules from the original child’s home. Same in school either with classmates or children from another class. Or the opposite, doing something that is ok at home , in someone else’s house.

This one was quite upsetting, child not speaking out when another child was hurting them because it was during quiet time on the carpet, and not understanding that it was in fact ok to speak out/tell someone.

Time was, in the grey mists of MN time, when the number after DS or DD would indicate not the child's age but its ordinal status in a sibling group:
DD1 = first daughter, DS2 = second son.
The child's age would be written afterwards in brackets: "DD2 (12) has struggled to settle in secondary school."
This handy convention, which used to prevent ambiguity, is falling out of usage unfortunately. I still interpret "DD6" as a sixth child / daughter before reasoning that, on balance, it's more likely that an OP refers to a 6 year old daughter.

I remember that and you do still see it, but when the OP is referring to only one child throughout the post and that they are young, it's a safe assumption that they mean a five year old when they say DS5 and they are not in fact a 14 year old, especially when they also refer to preschool behaviour (implying this was relatively recent) and small children.

Well there's part of your problem. Thankfully DH used to take DS to the barber and neither ever shaved their heads. I appreciate it's on trend nowadays.

I mean, that is literally one of the markers of autism. But NT 4 year olds are all still learning too , which is why you need an expert to pick apart whether your son's understanding is age appropriate or not.

Autistic children need more explicit teaching of the rules, and that falls largely on you. Why is your husband letting him cut his hair? This might be quite unhelpful - your son needs to learn that other people's bodies belong to them, and it is not acceptable to cut bits of them off. Rather than "he has a point" I would be thinking what you could change to help him understand and remember this social rule.

You could have just given the answer of 5 years old!

Bumpity, I see the "there's a relatively high rate of diagnosis in children and young people who are assessed for autism" observation quite frequently (I work in education with colleagues who resent the expectation of reasonable adjustments and therefore seek to cast aspersions on the veracity of the clinical process -tedious, I know).

An 85% 'hit rate' really isn't that strange: it's not as if there is a random sample of CYP undergoing routine assessment. In order for a child to be referred for assessment by school or GP, there is quite a high initial burden of indications required in order to meet threshold and be placed on a waiting list.

The 'sift' at pre-referral stage is rigorous which means that ALL CYP who make it onto the waiting list for assessment already have significant traits indicating developmental delay and social and communication differences. Sure, in some cases, there may be other reasons for such learning differences, but thanks to robust screening at the referral stage, it stands to reason that the majority of clients referred for a service are likely to meet the threshold for diagnosis.

During my DC1's assessment process (referred for assessment by primary school aged 9, finally assessed aged 13 after fast-tracking by secondary school) the children and young people I observed in the assessment centre's waiting room over the course of our appointments were all, unambiguously, displaying traits generally associated with autism.

My point is that the 85% refers to a cohort in a group already pre-selected by a strong likelihood, not 85% of the general population, which is what some of my eye-rolling "Gawd, it seems everyone's a bit autistic these days..." colleagues might exclaim.

Yes, I agree; context usually comes good. I was just responding to the (perceived) tone of your comment, which felt a bit curt trying to explain why the PP might not have been clear on OP's child's age.

I was on your other thread.

yes NT children pick this sort of stuff up much more easily.

however there are other possibilities than autism.

essentially for autism you need the triad of impairments and if a child only has one or two of the triad they will not be diagnosed with autism.

my child was not diagnosed with autism but instead was diagnosed with social communication problems. (I forget the exact diagnosis).

we also had to teach him appropriate behaviour, similes, metaphors etc. he did work with a speech therapist for a year which helped him with recognising emotions and she did a lot of social stories with him.

That's a very bald example and not many autistic children would persist in thinking that. More likely after initial confusion they would just find it an irritating and illogical way to describe heavy rainfall.

The level of literal language is much more likely to be misunderstandings in parsing inaccurate language use by NTs. Things like saying "OK kids, I would like you all to write about what you are going to do at Christmas". What the teacher actually means is "what people often do at Christmas" or "what your family typically does at Christmas" or "what you might do at Christmas". The teacher's language that they actually used "what you are going to go" signals for a factual answer set in the future and for children with literal language interpretation that could cause a shut down, because they don't know exactly what they are going to do because they haven't done it yet, and they can't give the factual response that the language set-up of the question given appears to require, if you are literal. This will look like a child "refusing" to write an answer, when in their brain they literally cannot give the factual response required.

I would say, OP, that your examples are suggestive. He hasn't understood the different social context and relationships between his dad cutting his hair at home, and him cutting his friend's hair at school. Like all events, though, you wouldn't diagnose based off a single event, it's about the rich picture of data.

@AutismProf "bald example" has me chuckling.

@WomanIsTaken
I'm afraid I fundamentally disagree with you. I think even your assertion that the other patients in the waiting room were 'unambiguously' showing traits of autism is rather misleading. There are huge overlaps between the traits of autism and other disorders and conditions. This is why the 85% statistic is so alarming. Of course you would expect there to be a higher prevelance of autism in those being assessed versus the general population but 85% is shockingly high when you consider the complexity of this area and the fact that many people will have autism related traits but actually be below threshold or have require another diagnosis.

I'm afraid you can't have it both ways. Suggest that the diagnosis is robust due to the detailed and complicated techniques used to assess people and then suggest that a relatively basic screening process (and no it really isn't robust considering the complex area of medicine we are talking about and how much it relies on self reporting from non medically trained patients ) has an 85% accuracy rate.

It isn't just uneducated or uninformed people questioning this and ultimately the concern is for those who are being potentially misdiagnosed.

I disagree and agree with @WomanIsTaken .
I have worked in autism diagnosis for over 20 years and our diagnosis rate is around 75 percent (or at least was in those referred pre-covid, haven't seen newest data, may be a bit lower), because we screen well. Our process is very robust. We don't rely on "self reporting from non medically trained patients". We do ask parents about developmental history. We also do observations in school (or another setting if YP is not in school), an ADOS (or BOSA where there is selective mutism in the picture) , and we have on hand other professionals to check out alternative hypotheses - ed psych to clarify it's not learning disabilities, SALT to check it's not DLD, psychiatrist to check it's not ADHD or a mental illness instead, OT to check for DCD. We always consider attachment as a core alternative. Any of the profs can do specialist assessments as a part of the autism assessment when this is necessary to rule out as an alternative explanation for the observed "symptoms".

The diagnosis is still somewhat subjective in that there is no blood test that says yay or nay, and there are times that it's a complex picture. I do find myself mildly offended that you think those of us working in autism diagnosis may not be aware that there are symptoms which overlap with other conditions.

How much experience do you have of the assessment procedure @Bumpitybumper ? My son’s diagnosis absolutely didn’t rely on ‘self reporting from a non medically trained patient’, but on detailed reports from a SALT, an Ed Psych, a Paediatrician and from his pre school setting. Do you think none of them considered any alternative conditions that could have been causing his difficulties?

Parents don't just refer their own kids based on their own feelings about the matter. There is a hurdle to get through in order to be assessed which is filtering out a lot of neurotypical children before they reach that stage. The school or childcare setting must observe significant signs in order to make the referral, even at private clinics it requires robust evidence from a second setting apart from the home. So the 85% diagnosis rate is likely skewed by having already filtered out the unlikely candidates where the school can't produce evidence.

He thinks literally - yes that is a trait of autism. My son thinks literally and its lead to a lot of fond memories of the crazy results after I have said something I think is quite 'normal' .. I have to think really carefully before I say somethings to avoid unusual outcomes.

if you were to point at something would that confuse him? Point at something and say' can you move that over there please' (don't name the item just point)

Does he ever point to things and say look at that?