Mild autism

[Sailorsgirl44]

My son is 8 and we were told last year that he has mild autism.. I've been browsing through posts on Mumsnet and have seen it said a number of times that this is no such thing?

The reason we put him through the assessment process was because he struggled a lot in his first year in school. He lashed out at other kids a few times and the teacher said he would find it hard to calm down after things like lunch break. In pre school he had fought quite a lot with another kid and had been bored a lot. In play centres I often had to leave early as he would have had enough of it and would go on and on at me until I left. At home he adores one sibling and is very easily irritated by the other.

I've noticed huge improvement in him over the years. For example we used to bring earphones to the cinema as he hated the loud noise at the start. The assessment team really focused on this issue. But after covid this didn't seem to be an issue in the cinema - we don't need the earphones any more. His behaviour with other kids is much better - he knows to walk away if there is a problem (as I've repeatedly taught him).

He does make eye contact, he can maintain conversations etc. He does sometimes make odd sounds - silly voices, etc. He also used to suck his clothing (around his neck) but seems to have largely grown out of that. He does hold his hands up in front of himself like a squirrel sometimes.. It seems odd. But if ever I say stop talking that way or put your hands down he will comply straight away.

He does have some class friends but due to covid I haven't seen him playing with them as much.

In school he gets a movement break every day from class. He's allowed to use putty if he wants to. And he is allowed to go to the back of the class to chill out if things feel overwhelming to him. I'm happy for him to have these supports in place. But I wonder if he was misdiagnosed?

hooverer what a great note to leave this thread on - it is really fascinating to listen to his POV on things which is often very different to the norm. Autism can be very difficult for both the parent and child but it’s much more than a disorder or dysfunction.

I so agree.

@Ponoka7

WTH?
My son is being assessed and does hand flapping a lot

He doesn’t do it so much outside but if he did I wouldn’t stop him

What a stupid thing to say
This is how people who already have such a hard dormer thinking that they aren’t ‘normal’ get mental health issues,

Absolutely disgusting

Getting rid of the Aspergers classification did no one any favors. My DD’s write up has phrases like “more in common with a neurotypical individual” and “should be encouraged to pursue careers that utilize her strengths”. Aka, she has autism, but she masks really well and she has extremely high intelligence. She is very similar to me.

Autism is a spectrum. There are plenty of us living pretty normal lives with jobs and families. Honestly at this point in my life I view it as more of an asset than a disability, but that is because i found a career where I can thrive. I have no doubt my dd will be able to do the same. That doesn’t mean that it’s not fracking hard at the same time and that having support isn’t helpful. I was just the weird girl who made teachers angry and sat alone. My dd has therapists, occupational therapy, and support at school. She has a mother who understands how her brain works and sets up our home to run in a way that works for her. It’s a completely different world of acceptance and support for her. That helps reduce anxiety, which is one of the biggest issues for people with the “mild” autism label.

Tal45

I wouldn’t agree with what you say or see the examples you give as masking. We all adapt our behaviour and we all grow. But neurotypical people don’t have to behave in a way that goes against their neurology or do things that cause them trauma, for example, tolerating sensory overload. That’s what masking means as I understand it, not simply learning to be polite.

@Tal45

Masking is a really useful skill

Is it bollocks. Masking is physically and mentally fucking exhausting.

@WhenZoomWasJustAnIceLolly exactly this.

Adapting your behaviour to the environment ie not shouting or singing in class doesn't have a 'cost' really to a NT person. Masking does, not all of it traumatic it's a scale, from tiring to traumatic to losing your sense of who you are and what you actually like..e.g to me eye contact feels uncomfortable. I'd really rather not do it. I can't help but do it since someone pointed out I didn't do it, so I realised it was 'normal' to do that and mimicked it. It feels weird inside, almost itchy. Lots of stuff like this for me - developed an over extrovert loud personality but fuelled and relied heavily on drink to get through social events. When not drunk, people pleasing, fawning.
As an adult unpicking yourself from habitual masking is hard (who the f am I?!) and it's not hard to see why undiagnosed ASC often goes hand in hand with mental health issues.

I'm less masked now older - probably eccentric but my skillset works for my role, this is great. I can be (mostly) myself, and the masking I do at work is what I would call adaption rather than faking a whole personality.

That’s a great post Nayday.

@Nayday

As others have said - let him be with the stimming, don't force him to suppress it.

If as an autistic adult you choose to mask, that's completely different to imposing masking on your child. My DS masks 'naturally' in some situations - he would never clothes suck in school, ever. He's not doing this particular soothing action as much as he gets older but he's still autistic. I should add that if he masks for a prolonged period, there's fall out/a price to pay - meltdowns. He's acutely aware of his differences and currently dislikes to show them. Actually his diagnosis led me to realise my own neurodiversity as I realise I 'mask' in situations, and even copy what others are doing. I thought it was what everyone does. (Its fine until I come to a free flow situation like everyone clearing away after a party - I literally don't know what to do and end up standing like a loose end).
Anyway I digress, you could of course get him reassessed privately but ASD assessment is pretty thorough, the presentation does change with age and the assessments are designed with that in mind.
Final point, teaching kids not to stim, make eye contact (if they don't do this) etc falls into a kind of behavioral training known as ABA, applied behavioral analysis. It teaches how to mask by practising NT communication techniques e.g make eye contact. Increasing numbers of autistic adults are speaking out negatively about the impact it has had on them, the trauma caused by suppressing stims, forcing eye contact. It has been compared to the equivalent of gay 'conversion' therapy.
There's a long way to go but also increasing numbers of people are speaking out about how to understand and make room for neurodiversity, not make it conform to something it isn't.

This is really useful, thanks so much. Ds is currently going through assessment as a teen. In part, his ability to mask meant that it was difficult to get school to fully understand some of the challenges he faced. We’ve never discouraged stimming nor forced eye contact but your post helped me realise how important it is to understand how we frame discussions around traits. For example, I now realise that I tend to speak in a positive way about how he has developed strategies to make lack of eye contact less noticeable when interacting with NT people. It hadn’t occurred to me that this it might be interpreted as a value judgement but I can now see how it implicitly conveys this. This is a real learning journey and each bit of insight that helps understanding is gratefully received.

yes @MagpieCastle a lot of autistic 'success' is judging how NT the person can appear to be!

Its time for NT people to have a little understanding on why/what/how ASC feels, which is why threads like these and questions like the OPs are so valuable.

I see the 'but how will they cope in the real world' appear from time to time (ie as a defense of masking) - well this is everyone's 'real world' and there's room for 2 way understanding of NT, ND behaviours and internal workings.

All the best for your son

I felt rather uncomfortable with a lot of the suggestions and recommendations that came with DD's assessment. Reading them I just kept thinking "but if DD did all that she wouldn't be DD anymore."

I don't want DD to change so other people will accept her. I want other people to figure out how amazing she is!

In school he gets a movement break every day from class. He's allowed to use putty if he wants to. And he is allowed to go to the back of the class to chill out if things feel overwhelming to him. I'm happy for him to have these supports in place. But I wonder if he was misdiagnosed?

Honestly all this tells you is that with supports in place he is currently coping well with the school environment. My DS while he has stims at school that might make it obvious to a casual observer that he's Autistic has so far needed zero supports at school, that doesn't mean he's not Autistic, it just means the supports we have in place at home are allowing him to cope at school. Our DC are all Autistic and all mask to varying degrees and need different supports. Our DS is the one who has the most classic Autism. His sister no one would pick it, if Asperger's was still a diagnosis she'd have gotten that diagnosis instead being diagnosed as Autistic. She went through the first couple years of school coping well, it's only recently at nearly 10 it's gotten to the point where life and friendships have gotten complex enough that she needs supports. She's only been recently diagnosed, because of how well she masked. The amount of support all 3 have needed has varied a lot over time. I'd leave the supports in place and see how he goes over time. You might find in a year or two that he suddenly needs a lot of support, or not. I wouldn't rush to have him reassessed or to decide he's not Autistic. It would be very unusual to get a diagnosis that wasn't warranted, it's very much the opposite for a lot of parents.

Why would you want him to have been misdiagnosed? Worst case and he has been then the "label" he's been given is allowing him access to supports that make his life easier. When he's bigger he can choose to share his diagnosis, or not. Either way it doesn't define him. If he identifies strongly with it and wishes to advocate for a community he sees himself as part of then so much the better. I don't understand what is to gain from "undiagnosing" him at such a young age.

@brushlaptop

Sounds like he was misdiagnosed, but if the things he has in place at school due to the diagnosis help then maybe just leave it? You can just know for yourself that he's not autistic and will lead a normal life but if he wants to be allowed to play with putty then why not!

On what basis can you possibly come to this conclusion?

Right now things sound good
And may it stay that way
Be warned that with the onset of puberty and secondary school things might change
So hang tight but I’d not totally discard

I was the same about my sons asd diagnosis
But now I’m facing such unhappiness , school refusal , and some major emotional outbursts I’m glad to have a baseline

@Sailorsgirl44

But I'm not even sure if it is stimming? Currently he sometimes does silly voices and 'squirrel hands'.. But in a messing around sort of way.. I don't think he's doing it to regulate himself? It doesn't bother him at all if I suggest doing something else to distract himself like reading, a card game or whatever. He's very good at listening and taking suggestions.

Yeesh OP, you have so much learning to do. Can you find an autism parenting course near you? Sounds like you need it.

It’s really hard OP. I think families can accommodate each other so well that things are normal in every sense at home and I mean just regular normal life in your family. And that’s good and how home should be.

We have a house full of ND and I have to say my now adult autistic child was great company and often content at home. The challenges were mainly the outside world and the fit or lack of it.

We mostly all bump along ok. Our biggest clash now is my tone policing which understandably winds them up. It happens if I comment on something being said harshly or rudely (to a sibling). We get through it with some heated debate and a bit of huffing and shoulder shrugging from both of us.

The arms thing, maybe it makes you worried? It’s easy when you are wrestling with what’s going on to prefer to see signs that feel reassuring for you but it’s important to try not to give messages about NTbehaviours being better than ND (huge simplification of complex issues).

Here’s someone talking about arm posture and comfort when relaxed that may be interesting.

www.google.co.uk/amp/s/neurodivergentrebel.com/2019/02/06/what-is-autism-from-an-autistic-adult-2/amp/

@3scape

Hi. My son sucks clothing around neck, berates other children for not following rules, wears ear defenders in a few places, can get confrontational about space at school, spins around when excited has very deep seated obsessions, ignores anything not of interest to him, has to sit on a flexi board seat thing, needs help to get into class every morning still, has toileting troubles and we can't get a referral for him / teachers saying it's all expected behaviour Where are these magic professionals willing to support assessment?

Thanks very much for all the useful responses..

In relation to the above post we are in Ireland.. I'm sorry - I hope your son gets the supports that he needs. We did wait almost two years for the assessment. This is part of my questioning the process now - I feel my son changed so much in those few years.

My son used to suck his clothing but seems to have outgrown it.. He currently doesn't have any other of the issues you've listed.

I've been researching stimming... I don't feel my sons stims are involuntary? They are not every day, sometimes not even every week. He might sort of run around with 't rex' hands but if I say to put his down (in case he falls while running) he'll do so with ease. I would never force him to stop something that is helping him to cope.

I have no intention of stopping the supports from school. And I'm aware things may change as he hits puberty. What made me post was seeing other posts where people say there is no such thing as mild autism.

There are different levels diagnosed in Ireland.
Basically the impact it has in each area of every day life.
There is a huge spectrum of traits and how they impact the person individually.
My DC are totally different.

OP the whole argument related to labels and 'mild' autism is that people who have only 'mild' or 'high' functioning autism are not deemed to need much support. When in fact they need a lot more than what is currently given.
This however doesn't change the fact that there are people who will never - no matter how much support is given - be able to lead an independent life.
The labels 'low' and 'high' functioning were actually made to reflect the above.
It has now become a point of contention because people are angry. When the real issue is that needed funding has been cut across the board.

Listen to what the professionals tell you and don't get too hung up on what other people say about labels.

*ofc by professionals meaning what the combination of specific traits are.

@EmeraldShamrock

There are different levels diagnosed in Ireland. Basically the impact it has in each area of every day life. There is a huge spectrum of traits and how they impact the person individually. My DC are totally different.

Exactly - it's too individual to make a broad judgement. The extent to which behaviour can be changed, the need for it to be changed, there is no one sized fits all answer. Masking for example - forcing eye contact etc is unnecessary and causes a lot of stress. But being flexible or avoid saying things that hurt others (and yes, this others includes other neurodiverse people as well, not just NT's) is necessary.

Anecdotal example but DP is autistic , so is the majority of his video game group . None of them want to play with a particular autistic boy who is very rigid and always wants the game his way, or is very blunt to the extent of being insulting (he called DP fat and me ugly).

It's not all 'NT's vs ND's. Never mind the fact that 'ND's are not a homogenous bunch. I have ADHD and traits that are the complete opposite of DP :D well mostly

I've found your thread really useful OP. I'm just at the start of this journey with my 3yo with GDD and possible ASD.

I'm in England and I have heard 'severe autism' used by professionals as during one appointment they asked if there's anyone in my family with autism or if I have any experience of it. I explained my friend's tween has autism, she is non-verbal, incontinent, has some very challenging behaviour and has just moved to residential care. They (the paediatrician) described her as 'severe'.

The spectrum is a wheel - it's not linear with mild at one end and severe at the other.

A child who is at mainstream school might struggle with being in a noisy crowded place just as much as one who is non verbal and is in a specialist residential school. The difference is in how much they are able to mask. And of course tolerance levels differ.

@EmeraldShamrock

There are different levels diagnosed in Ireland. Basically the impact it has in each area of every day life. There is a huge spectrum of traits and how they impact the person individually. My DC are totally different.

Surely the criteria using either the DSM V or ICD 10 don't change depending on which country you are in though?

To meet the diagnostic criteria a person must show deficits in certain areas, that's not about the 'traits' shown at all. Of course the traits information help to gather a fuller picture overall but they are not diagnostic criteria alone.