I keep hearing my son might be neurodivergent but I don't feel he is

[user1477259453]

Basically, my son is nearly six and he has a few behaviours that I understand could be seen as neurodivergent. The teacher and his play therapist have said this. (He has a play therapist because my younger son was in hospital for seven months as a baby, when my older son was three, so I was away for months... And since I have gone back to work recently he has seemed unsettled so we were worried about him feeling abandonment)...... He hates having his hair cut. He benefits from structure and knowing what the day will look like at school. He has hyperfocus on certain interests (currently Mario... He will draw about Mario, imaginary play about him, play Mario games on the computer, etc etc) and he is aloof/rude with some new people. By no means all, some people he takes to immediately. He also sometimes gets a little overwhelmed in big loud places.

What I find frustrating is that people will make assumptions about the rest of his behaviour based on this? They will be surprised that he has never had a tantrum or meltdown in his life. He happily goes to anywhere new with me. He's a pretty good eater and his sleep is amazing. He is absolutely fine with any plan change that ever happens, far more so than I ever was as a kid. He enjoys playing with and communicates very appropriately with all of his peers at school and has warm friendships with them and with his teachers. He's very thoughtful and empathetic with those close to him, particularly me. He has a great understanding of inference and a good sense of humour, his understanding isn't inflexible or literal a lot of the time. He hit all milestones very appropriately in his pre school years.

I wouldn't mind if he had every behaviour that people expect from autism, or if people were suggesting he was neurodivergent just based on the behaviours he actually does have. But it just really annoys me when they make assumptions or suggest that I'm not being honest about the behaviour that I observe or that I'm blinkered in some way? It makes you think he's in this in between land and I think am I overlooking things that I could be helping him with but on the whole he doesn't need help and the little things that bother him come up infrequently and mildly and don't really affect any of us. Just after anyone who has been in a similar situation really. Did your child end up needing help in the future, did they turn out to not be autistic. Etc. Thanks!

Your feelings are just feelings though? If professionals say he seems ND and everything you've described says he is ND then it's likely he is.

If he's not then steps to help and protect him won't harm him. But if he is ignoring those aids will harm him.

Thank you. As I have said in previous posts he's been through very significant trauma in his short life and so I don't feel we should make a decision as to the cause of his few minor behaviours at this stage, especially given he's managing ok. But I have taken a lot from the posts here and it will help me plan for the future if it becomes obvious that he needs extra support.

But you're not making a decision - you cant make the decision about what's causing these behaviours. You're not a doctor.

What you can do is put your son in front of professionals who can tell you what's going on and what he needs from you, the education system, etc. if the answer is he's absolutely fine and needs nothing, awesome. If the answer is he's ND then well done, you've been a brilliant advocate and got his needs catered to before they impact his life.

There's literally no downside to finding out the truth. I understand it's like opening a scary door though.

Thank you, I do get that but I think that in the case of trauma no one can really know especially when they're so young? I mean the professionals I've dealt with have actually said that to me, that it could be ND or it could just be attachment trauma. Honestly if I spent £2500 on a private diagnosis right now, I don't think the professionals in all good conscience could give me a definitive answer themselves. As many have said ok here, I think it's going to be about waiting for it to play out and be ready to step in and ask for a diagnosis if things don't resolve or worsen. You say I'm not a doctor but also many people here are experts on autism but not on trauma.

Maybe - we had to go private urgently when our child became suicidal, and if we had to wait for CAMHS I don't think she would be here now.

What worries me is the posts advising 'keep a note of behaviours' or whatever because then you'll feel like you're somehow acting but you're not really.

I just think that if a few different people are seeing traits you owe it to your child to start figuring that out; waiting around isn't really in his best interests.

DD(11) has had what might be seen as "autistic traits" in the past, particularly coming out of lockdown. Essentially being rude, awkward and having age-inappropriate meltdowns. She's matured and settled now, and grown out of it. So I'd be cautious if he's not having any serious problems. ASD seems heavily marketed at the moment and people are very keen to armchair diagnose.

My children are still youngish (eldest is nearly 10) so I don’t know.

but my dd had a lot of behaviours as a younger child that might have looked autistic to people who didn’t know her but she has sensory processing difficulties but without autism.

Also my ds stims and it’s very noticeable and people comment on it, but he is very socially appropriate, has lots of friends, emotionally aware, fine with change, very easygoing. He also seems to have some sensory processing issues.

my partner is neurodiverse, but we have really kept an eye on the children and both don’t have signs of adhd or autism now just some quirks.

It's such a myth that autistic people aren't empathic. There is now research that shows that it's expressing empathy that autistic people find difficult but that they are often incredibly sensitive to other people's emotions. Autism involves communication difficulties and often these miscommunications get misinterpreted as things still tend to be viewed through a neurotypical lens.

I was diagnosed as an adult. Some of the traits I embody fully, and some far less so. I did have meltdowns as a child and teenager but somehow these got totally overlooked and I wasn't diagnosed til 40. Him curling in a ball to self regulate sounds like it could be an indicator. My nephew has just been diagnosed and apparently his primary school teacher reported that he often sings to himself under the table in class. This had never been mentioned before until the assessment process. It makes me smile to think of it but it is true that this behaviour is out of the ordinary and probably wouldn't be tolerated in other settings.

A diagnosis doesn't change who we are but it does help us to understand who we are. Also, all the ND labels seem to have so much overlap these days. Sensory issues can be an indicator of several ND conditions. The diagnostic boundaries seem to be blurring and nat well change. Afterall, all these conditions are just the perspective of a group of people about how to categorise other groups of people. They're all 'man made' as it were.

This has happened to me. My son is very similar to what you've described. We have actually had him seen by specialists and he has not had a diagnosis. I think he just has social anxiety sometimes and just a bit different. Being different doesn't mean you're autistic but it does piss me off when some people suggest he might be. There's nothing wrong with it but I get annoyed with armchair diagnoses from people who don't actually know anything about it. We are trying to just love him for who he is and support him as best we can and if he does ferment any issues we will get him reassessed. Would be great to know how you get on.

*may well change

Why did you go for a diagnosis? How did it help your son? Interested as this sounds a lot like my son as well

He might be. But...you need enough evidence of difficulty to get a diagnosis. He might be like DD and be more obvious later. Don't leave it too long to seek diagnosis as waiting lists are years long.

OP, I appreciate your instincts about this are important, but also think it is pretty much impossible to accurately judge, as a parent, as autism covers such a huge spectrum of human behaviour and everyone's autism is individual. Plus I think we probably cannot help but carry a stereotyped view of what autism looks like, given representations in the media etc.

On trauma, of course it is quite possible to have both a history of trauma AND autism. The assessment process considers both alternative and co-existing explanations, so trauma would be weighed up within the assessment process, and there would be a thorough discussion of family history with you.

As PPs have said, things can become clearer as kids get older, but that can come at quite a price in terms of self esteem and wellbeing if, at that point, social relationships with peers have become difficult or school attendance is affected.

Your child is your child. They may be an autistic person or may not. Regardless of diagnosis they will still be the same person but with a diagnosis (if required) you are in a better position to support your child and understand who they are. If two professionals believe it's possible then I looked at having him assessed. So the actual trained qualified professionals can make a decision rather than you as a parent second guessing what they may say.

If your child is autistic by knowing you can support him better with a greater understanding of his needs. School can also support him better and apply for additional support if needed

Mumsnet loves diagnosing kids with autism from a couple of posts online. And the narrative is always the same - you need to pursue a (costly and/or drawn out) diagnosis immediately because if not things will “go off the rails” at secondary school, and you’re letting your child down if you don’t. It’s easy to trot this out without knowing anything about the bigger picture.

We had to shield during covid so my child had no contact with other children from the age of 23 months to 3.5. He then started nursery and, unsurprisingly, found it hard to settle in there (cried at drop off for a long time) and was shy with the other kids. Since he’d spent so long with me and his dad his communication was really advanced, and he’s a bright boy generally. His nursery suggested he might have ASD based on his reticence with his peers. I posted on here had had pages and pages of posters telling me that not only did he likely have ASD, but that DH and I probably did too and we were all in denial!

It actually really profoundly affected me because when people are telling you that failing to pursue a diagnosis of something you think your child doesn’t have is tantamount to child abuse you really do question everything!

Anyway I decided to give it a year and see how transition to school went. He absolutely blossomed in reception - had no issues with settling in, has made lots of close friends and is very happy. His end of year report described him as a very sociable and popular member of the class. (And before people jump on me I know people with ASD can be sociable, but the fact he was not sociable at nursery was the sole “symptom” the nursery staff identified for him).

Your son is very young and sounds like he’s had to deal with a lot already, yet despite that is doing really well and doesn’t need any additional support to thrive at school or home. What more could you want?

I think to some extent you are confusing 'autism' and 'neurodivergence'. You can be ND and not autistic.
It is quite possible your son could be assessed for autism via ADOS and not meet the threshold for diagnosis. You need to display traits in several areas and even if you score highly in one area if you fail to score highly in another you won't get the diagnosis.
Your son could get a diagnosis of Sensory Processing Disorder instead. He can be considered neurodivergent without being autistic.

There are huge problems with confirmation bias, circular reasoning and general lack of critical thinking throughout the world of developmental disorder diagnosis. Often people see a few traits that could reasonably be interpreted as autistic or ADHD, get drawn in by the sense of control and certainty (and practical educational support) that comes with a diagnosis, and lose all ability to view the situation objectively, taking into account all the things about the child that don't support or actively contradict the diagnosis.

Diagnosis is supposed to be done according to rigorous criteria, where it would be perfectly possible for a child to meet some of the criteria for autism (say) but not be diagnosed with it because they don't meet a sufficient number, with sufficient severity. But in practice the language in which these are couched is so woolly that just about anyone can be interpreted as having just about anything if you're determined enough, and many of the professionals involved have a shocking lack of rigour or respect for scientific method in how they interpret them. Much like we're now seeing in "diagnosis" of so called transgenderism.

I would be happy about the fact you're not tempted to go down this rabbit hole and save the idea of a diagnosis for if and when there arises some genuine practical need for it. Or just wait till your son's old enough to go on tik tok, then he can diagnose himself.

Just be aware that not all private diagnoses are accepted by the nhs or education system, so relying on accessing that if things change may not help. I agree it can be difficult to unpick behaviours due to trauma or autism. Some autistic children experience trauma because of their struggles with the world around them.

NHS waiting lists for assessment are generally a couple of years in most places. I’d say that if two professionals have flagged this as a possibility, then why not get a referral. A lot can change in 2 years for a child - behaviours may change, things may become more apparent. If he isn’t autistic then he won’t be diagnosed as such, and you may be able to access more targeted support for trauma - at least you will be able to tell the professionals he has been assessed and not diagnosed because that question may keep being raised as a possibility.

If he is in fact autistic, then he will need different support, and both you and he can have a better understanding of him and how he experiences the world, and what his needs are.

it’s not a “label”, or something to be feared, nor is it rocking the boat. At the end of the day he is still the same child, regardless of the outcome, you just may have better understanding of his behaviours and quirks, and what support he actually needs. There is nothing to lose by going through an assessment.

to add that pp have mentioned children with (undiagnosed) autism “going off the rails” at secondary school, because that happens all too often. It is well known that it can fall apart at that stage because it is a massive transition, demand hugely increases, children have to navigate bigger schools, move from lesson to lesson, changing teachers for every subject, puberty brings its own challenges for autistic kids too. Is it any wonder so many autistic kids fall apart when entering secondary school? And why it can become apartment they are autistic at that time?

after reading what some parents and children have experienced, I’d certainly not want to wait to try and access support for my kid once the wheels have actually fallen off. Frankly there’s bugger all support out there to be had.

My experience over the last three years is that private assessments are accepted by the NHS, local authorities and education as long as they are done to accepted standards. In fact our local authority has subcontracted OT as they haven't got capacity. I also think waiting lists for NHS ASD diagnosis are longer than 2 years in many areas. More like 3 or 4. There are also waiting lists for private services. We waited 4-5 months for a private ADHD/ASD assessment and were seen then only because we took a short notice cancellation.

OP, there are clearly a number of narratives about neurodiversity circulating here, including some that stigmatise or stereotype autism, or the families of autistic children. This stigma is real and shapes how we feel and act as parents.

Thinking critically about options is obviously a good thing, but it may also be helpful to consider evidence in respect of the benefits of diagnosis to those who do go on to receive one following assessment, and the evidence that informs the assessment process itself. Good luck, whatever you decide.

For reference, NICE assessment guidelines

Sure but there’s no need to scaremonger. OP has a 6 year old who is 5 years away from moving to secondary. It’s not all or nothing. By 8 you’d expect a NT child to have (likely) grown out of some of the stuff the OP has mentioned so if he hasn’t and/or if other issues have arisen then there’s still plenty of time to pursue a diagnosis then, and it’s still years before the secondary transition.

But I guess that what that misses, @Tetherless, is that being neurodiverse in a neurotypical environment is a stressful and difficult thing, unless that environment is adjusted to take account of your needs? And that the battle for adjustments at the point that needs are fully understood, is often also measured in years. I've not heard many autistic people or families of autistic children say, yes, a late diagnosis was just fine, because not being understood very well during prior to that time, can lead to problems with self-esteem and anxiety, and a later diagnosis can also introduce issues for a young person's social identity.

Which absolutely isn't to suggest that OP's DC is neurodiverse. We can't possibly know either way.

@coldcouture it sounds from the OP that all of her son’s needs are being met though. OP has said she’s in a position to go private if something changes. So what’s the problem?

This. I was diagnosed aged 45 and it's changed my life. I wish I'd been diagnosed decades ago. A diagnosis really helps, you can't access help without it, you can't ask for reasonable adjustments without it.
OP, your son sounds just like me and my autistic children, please get him on the list for assessment, the waiting lists are long and schools might help a bit in primary without a diagnosis but they won't at secondary (and even with one they are often quite shit).
You sound in denial because you think being autistic is a bad thing, but it isn't, it's just a different way of being. Please change your mindset and get your son the support he needs.