For thinking we wouldn’t get an ASD assessment

[MrsRathbone]

S is 5. He’s a happy boisterous little boy. Very funny, bright and caring. However he has a couple of signs that he may not be entirely NT. He runs back and forth and jumps when excited. He quite often repeats words/phrases under his breath. He is very interested in planes and trains. He didn’t play with toys typically as a small toddler although he mostly does now. He was late to point and he had a slight speech delay but now he doesn’t stop talking. He has friends albeit he tends to enjoy one on one play best. He is in mainstream school, doing very well and certainly progressing. Nothing else stands out as ND about him. He eats and sleeps well, he’s very kind, caring and enjoys playing with his friends. No obvious social difficulties, no problems with routine or repetitive behaviors, no sensory issues. Always makes good eye contact. Loves going to new and busy places. My gut is telling me he is NT but perhaps with a few autistic type traits but what do other people think? Would he even qualify for an assessment?

Why would you want to? If there is sufficient evidence, he may be accepted onto the (very long) waiting list for a social communication assessment, but if, as you say, there are no concerns regarding his language, social interactions and no sensory needs, in addition to no concerns at school, I see no reason you would pursue further investigation at this point.

I guess I’m thinking to the future and wanting the right support to be available to him should he need it. He certainly doesn’t need it at the moment but as you say, the waiting list is long…

Any cluster traits need to be causing difficulty on a persistent/daily basis across three areas but primarily social communication.
He runs back and forth and jumps when excited. He quite often repeats words/phrases under his breath. He is very interested in planes and trains
I don't think these three traits alone would be a cause for concern but I'd make a note of them and wait and watch.

I have a friend whose son is diagnosed as being Autistic. She says that her daughter shows Autistic traits, but doesn’t feel she would be diagnosed with Autism. It may be the same for your son, in that he has traits also.

Many "high functioning" children, who would have possibly received a diagnosis of Asperger's back in the day, no longer fit the criteria as definitions have narrowed/areas of difficulty have widened. You are not wrong on a 2-4 year wait but it would be doubtful if there are no persistent challenges/difficulties presenting, that a referral would be made.

@Dostadning sorry for my ignorance but what are cluster traits? I don’t think any of the traits he has are causing him any difficulty at all, they’ve just caught my attention but as I say, he is a very happy and content little boy. If all stays like that then happy days but everyone seems to be saying that early diagnosis means better long term outcomes so 🤷‍♀️

More than one trait/symptom in an area. Your son has three separate traits but appears to be socialising well.

People with ASD display traits in a number of areas:

1. Social interaction and social communication which may include:

• Difficulties imagining situations outside immediate or known events and behaviours
• Differences in using and understanding body language, facial expressions, tone of voice
• Difficulty with taking turns in a conversation
• Difficulty recognising, understanding and expressing their own emotions, as well as understanding and predicting other people’s behaviours or feelings
• Not using tact and diplomacy

All of these features could make it more difficult to fit in socially.

1. Repetitive and restricted range of behaviour

• Avoidance of change where possible
• Adherence to rituals and routines
• Unusual specific interests which may amount to obsessions
• Engaging in repetitive actions or movements

1. Intense interests

• Intense and highly focused interests, often from a fairly young age; these can change over time or be lifelong;
• Autistic people can become experts in their special interests and often like to share their knowledge, which can come across as excessive;
• They can become so engrossed in particular topics or activities that they neglect other aspects of their lives.

1. Over- or under-sensitivities to sensory stimuli such as:

• Dislike of loud noises;
• Dislike of bright lights;
• Dislike of certain food or clothes textures;
• A reduced threshold to pain.

Research has led to these features being brought together into the two domains of :

1. Social Interaction and Communication Deficits
2. Repetitive/Restricted Behaviours (incorporating unusually intense or narrow interests and difficulties adapting to change) and Sensory Sensitivities

People with autism lie on the intersection of these two dimensions, meaning that they have to show sufficient features in both groups of symptoms in order to fulfil the diagnostic criteria for ASD.

So your son possibly has repetitive movement, echonalia, and a particular interest in planes but three single traits don't indicate him currently as struggling.

I have a 5 yo daughter with high support need ASD, so not like your son, but I would always say that if you have concerns, then go with your gut and pursue investigation.

They can only say no. If you still aren't convinced by that, push further.

FWIW, it turned out that I have the same genetic disorder as my DD and our genetic counsellor has said he would back me up if I wanted to consider an ASD assessment for myself as I did have signs, but more like your son than my daughter.

To counter a previous comment, I think an assessment and potential diagnosis would have helped me realise why I was such a strange child when I was younger. I'm sad for my younger self that the awareness wasn't there when I grew up in the 90s.

Autism Spectrum Quotient (AQ) (psychology-tools.com)

Do they/can they take part in imaginative play OP?

@Dostadning very much so, he’s constantly making up games and scenarios in his head and acting them out (and quite often wanting us to join in too). That said, when he was a small toddler, it was much less so

The questionnaire you posted @Dostadning seems aimed at adults rather than children?

That said @Dostadning ive done it as best I can considering I’m talking about a 5 year old and he scored 18 so sounds like I don’t need to be concerned

So his imaginative skills are neurotypical for want of a better word. Yes, sorry, the questionnaire is not aimed at five year olds and is somewhat out of date anyway but social cues/imagination/flexibility come up a lot and it would appear that your child is fine in these, no?

Chances are he'd be rejected for assessment anyway as the NHS in some areas is so overwhelmed that the criteria to be accepted for assessment (and to be put on the waiting list) is that they are completely non-verbal or other severe needs, or that family life or education has completely broken down.

I score 22 OP. My child on the pathway scored 32 (possible Aspergers). My teen undiagnosed and not on any pathway but masking for Great Britain 42.

‘Children put at risk’ as NHS autism assessments are cut back | Autism | The Guardian
Yes if you're in the South West particularly, you're fucked.

He shouldn't get more/less support for not having a diagnosis, support should be based on need at school not diagnosis. That said if he has a diagnosis there will probably be little support anyway, mine was diagnosed with Aspergers at 11 and has never had any support or any offer of support of any sort. It may help with teachers understanding him but if there are any concerns at school you can talk to them about the possibility anyway. Most teachers he has had have had very little understanding of ASD anyway and even things like getting him sat at the front of the class because he can't filter out distractions has been surprisingly difficult.

Your DS is still young so I would just wait and see for now, by late primary school it will probably be more clear as this is when friendships and things start to get a bit tricky and the difference start to show more. What I would recommend is writing a list of everything you've noticed that could suggest ASD and keep on making notes, that will be really useful if he does end up being assessed at any point. For now i wouldn't worry too much though.

That questionnaire is awful IMO! Many people with ASD are not obsessed with numbers and dates and understand jokes perfectly well -as mine does. It's just the sort of stereotypical crap I expect from Baron-Cohen who I really can't stand.

@Dostadning yes I would say so. If I was doing it when he was younger, I’d say he had significantly more difficulties but now he is always pretending things and trying to involve other people in those imaginative games. He is very flexible on things like routine and transition etc

He shouldn't get more/less support for not having a diagnosis, support should be based on need at school not diagnosis
Quality Teaching First, aye

mine was diagnosed with Aspergers at 11 and has never had any support or any offer of support of any sort
Doesn't surprise me. They may have a Learning Plan but diagnosis does not equal an automatic EHCP/LSA/interventions because it's needs based and schools are chronically understaffed and underfunded.

I suppose there is also an element of just wanting to know whether he is or isn’t. Just so that I can start to get my head around it. Is that bad?

Focusing on imaginative play is really out dated. I have an NHS autism diagnosis as do my dc. I lived in an imaginative world, 1 of my dc never played with toys or every engaged in imaginative play at all, the other two had pretty normal levels of imaginative play.

Apologies caramilk I thought it still played a part in the ADOS assessment.
Both of mine lack imagination, get stuck on creative writing, prefer non-fiction to fiction and struggle to picture things in their head. They are fantastic with puns, understand jokes and no difficulty making eye contact. The adage if you've met one person with autism, you've only met one person with autism rings true. I agree that tropes/stereotypes don't help.
Totally understandable what you want OP but sadly, it's not as cut and dried as that. I wish there was a brain scan or genes testing that gave conclusive diagnosis but I am not sure it would bring my eldest much, apart from a clearer understanding of herself/why she is wired the way she is. It certainly won't stop other kids being arseholes as they couldn't give a toss as to whose feelings they hurt.

I think it can form part of a bigger picture but a diagnosis don’t hinge on the stereotypical imaginative play thing. Ie yes if you’ve met one person with autism….

@Caramilk5555 this is the thing for me. He doesn’t seem like most of the autistic children we’ve met, albeit we haven’t met lots. I’d say he seems more like the NT children we meet was it it not for these quirks/traits that he has. But as you I say, if all autistic people present in different ways, how do differentiate between character/personality quirks that present like autism but aren’t, and a genuine ASD child? Please forgive my ignorance if I’ve worded that badly but I hope you understand what I’m trying to say

I think for some children they can cope until they can’t and the demands from life become
too much as more is expected from them. Some children mask too. Sometimes something like transition to secondary can cause the wheels to come off or as they get older they really start to stand out from their peers. This is what happened to all of us. All you can do is read up as much as you can and monitor the situation .