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?

Thanks for all the feedback so far. Another question.. The silly voices or having his hands like a squirrel are more often at times when he is relaxed. I get that someone with autism may stim to help themselves prevent getting stressed. But would they do the stimming at a time when they are at home in a chilled environment?

I think it is probably the case that he is coping well because he has the right adjustments and environment rather than that he has been misdiagnosed.

Autistic ds here - it doesnt sound like your ds was misdiagnosed and it does sound like the support in place is helping him to feel more regulated. My ds was diagnosed relatively late, and I believe he would be in a much better place if he'd been diagnosed early. I think you'd be doing him a huge disservice to question the diagnosis. He will get them help he needs because of it and any behaviours that indicate distress will be correctly interpreted and addressed appropriately rather than him being labelled a naughty problem child like my ds was.

@Sailorsgirl44

Thanks for all the feedback so far. Another question.. The silly voices or having his hands like a squirrel are more often at times when he is relaxed. I get that someone with autism may stim to help themselves prevent getting stressed. But would they do the stimming at a time when they are at home in a chilled environment?

Yes - stims are not only a distress behaviour

Op, there’s no such thing as mildly autistic just as there’s no such thing as being mildly pregnant.

Could your son have been misdiagnosed? Yes. But I doubt it and I’d put his general well-being down to him going through a phase where he’s coping better with day to day life in general. It could all change though at the drop of a hat.

Tbh the things you have said do sound very much like someone on the spectrum. What people mean when they say 'mild autism' is that the issues someone has have less impact on their daily living skills and functioning. It sounds like your son has learnt to cope with some of his difficulties. That is good, but it doesn't mean this will always be the case. I would not be pushing the diagnosis away as it can be key to getting him more support in the future.

My son also stims when he’s relaxed.

Please don’t stop him from doing it.

As someone who completes NDD assessments and confirms diagnosis I’d say it is very rare to mis diagnose. We look for the smallest of detail and of course symptoms have to be persistent and pervasive.
If a clinician is in doubt they would suggest and watch and wait approach.

When ds is sat relaxing every 5-10 minutes he will get up, bounce and flap across rne room and back and then sit down and carry on what he was doing. I don’t understand it but it’s very much a part of his relaxation process

Mild is not the term used usually, high functioning is often used, but I know what you mean. My dd is autistic, she's considered moderate on the autistic spectrum, I'm sorry if others don't like that term but it's the easiest way to describe it

It doesn't sound like a misdiagnosis to me, autistic people can become more able to deal with different situations over time. Mild autism is an unusual diagnosis though IMO, my ds was diagnosed with aspergers syndrome before they got rid of it, now everyone is just lumped into ASD with no kind of differentiation as far as I was aware. People might say 'but autistic people all have the same struggles' but it's bullshit, some severely autistic kids find almost every aspect of life overwhelming, they may have no speech, self harm, never be able to live independently. Mine is predicted all 8's and 9's in his GCSE's he's quirky and struggles with friendships and hanging out (boring) but is able to get on with others if he needs to.

The idea that autistic people are perfect as they are is also bullshit IMO, every child/person can learn and grow and find ways to cope with the things they struggle with. If I hadn't put a lot of time and effort into my ds he would still be struggling hugely with transitions and going anywhere would be a nightmare. Masking is a really useful skill and certainly not something only autistic people do, NT's behave in certain ways all the time that may not be they way they would 'naturally', they might swear like a trooper at home, but as a teacher it's not going to wash. They might like to sing at the top of their voice to any music they hear but they can't do that in an office listening to music while they work. My ds talks to himself all the time but he knows he can't do it in class because it's going to disrupt others. There has to be understanding around what people can and can't cope with but everybody has to adapt to some extent if they can to be able to work with/alongside others.

@onthinice yes, in England. From the Asperger's and ADHD team in my local trust. While the American diagnosis naming has changed, the consultant told me the UK naming won't officially change until next year, so they are still using Asperger's where appropriate. I gather that some teams have already dropped the Asperger's in favour of ASC/ASD but it's still valid.

No it doesn't sound misdiagnosed. During periods of low stress "negative" symptoms of autism tend to be more pronounced. Its easier to mask/adopt coping strategies due periods of low stress. Covid and reduced social demands, smaller crowds, less demands for physical contact and no school seem to have worked wonders for many people with autism.

During periods of low stress "negative" symptoms of autism tend to be less pronounced.

Gah typo!

I was diagnosed this time last year at the age of 50 and I was told they don't have 'mild' 'high functioning' etc etc. it's just ASC/ASD

What is his diagnosis? It can’t have been “mild autism” as that’s not the way it would be described. Was it ASD maybe, and you’ve interpreted it as “mild autism”? I think it’s easier to think of it as “subtle” or “overt” autism as how obvious it is is situation dependent rather than built in.

Masking is great if it comes from within but from an outside pressure can lead to much higher stress levels than you would guess for fairly minor changes. Tread gently.

We're in Ireland. And the formal diagnosis was Mild Autism. This was based on a one hour meeting with him and a child psychologist, with a SLT sitting in. And a report from the school which was done in late September when he was 7 by his Teacher who had only known him a few weeks. And a two hour zoom session with me where I answered lots of questions about him.

I am happy for him to receive any support at all at school so would never suggest this be reviewed. But wouldn't any child benefit from these supports?

Part of the reason I would question the diagnosis is that there has been huge improvement at home too (including in our long summer holidays and lockdown time). I don't do any additional things for him (like putty or deliberate movement breaks) that I don't do for my other two kids.

I'm glad to say that I find him so much easier to deal with now than when he was young. He is a good listener and his behaviour is reliably good these days.

@Caramellatteplease

No it doesn't sound misdiagnosed. During periods of low stress "negative" symptoms of autism tend to be more pronounced. Its easier to mask/adopt coping strategies due periods of low stress. Covid and reduced social demands, smaller crowds, less demands for physical contact and no school seem to have worked wonders for many people with autism.

I agree. My son has a diagnosis of classic manners autism along with epilepsy and Tourette’s. He requires 2-1 round the clock care that he has at home with me with me and there is always another person in the vicinity. He’s never been to school and he’s a grown man now.

COVID has been great for him and if anyone is interested he tells me it will go away in 221 (and counting down) sleeps.

@Sailorsgirl44 did your ds undergo an ADOS assessment?
I'm in NI and assess for autism. We wouldn't use the term mild autism. Autism is autism, if someone meets the diagnostic criteria they meet it. We use the DSMV-5 which doesn't use Aspergers or high functioning etc.

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.

@Pythonista @onthinice I've been checking the information I was given at diagnosis this year. It seems that the American term changed some time ago in DSM-5 but in the UK we generally use ICD-10 which is the WHO version. It's expected that ICD-11 will be available from early 2022 and may follow the wording of DSM-5. So it just seems to be a case of which manual your diagnosing team use.

www.autism.org.uk/advice-and-guidance/topics/diagnosis/diagnostic-criteria/all-audiences

We're in Ireland. And the formal diagnosis was Mild Autism.

Neither ICD 10 nor DSM V will produce a diagnosis of mild autism. Thank goodness.

ICD 10 which can be used still in the UK does allow for an Asperger's diagnosis but it is changing with the introduction of ICD 11 and will come into line with the ASD diagnosis which is given using DSM V

@Tal45

It doesn't sound like a misdiagnosis to me, autistic people can become more able to deal with different situations over time. Mild autism is an unusual diagnosis though IMO, my ds was diagnosed with aspergers syndrome before they got rid of it, now everyone is just lumped into ASD with no kind of differentiation as far as I was aware. People might say 'but autistic people all have the same struggles' but it's bullshit, some severely autistic kids find almost every aspect of life overwhelming, they may have no speech, self harm, never be able to live independently. Mine is predicted all 8's and 9's in his GCSE's he's quirky and struggles with friendships and hanging out (boring) but is able to get on with others if he needs to.

The idea that autistic people are perfect as they are is also bullshit IMO, every child/person can learn and grow and find ways to cope with the things they struggle with. If I hadn't put a lot of time and effort into my ds he would still be struggling hugely with transitions and going anywhere would be a nightmare. Masking is a really useful skill and certainly not something only autistic people do, NT's behave in certain ways all the time that may not be they way they would 'naturally', they might swear like a trooper at home, but as a teacher it's not going to wash. They might like to sing at the top of their voice to any music they hear but they can't do that in an office listening to music while they work. My ds talks to himself all the time but he knows he can't do it in class because it's going to disrupt others. There has to be understanding around what people can and can't cope with but everybody has to adapt to some extent if they can to be able to work with/alongside others.

That's a really good point. We all have our 'outside' selves, neurotypical or not. Much of human behaviour is 'performed' out of politeness or social conventions.

@Sailorsgirl44

Thanks for all the feedback so far. Another question.. The silly voices or having his hands like a squirrel are more often at times when he is relaxed. I get that someone with autism may stim to help themselves prevent getting stressed. But would they do the stimming at a time when they are at home in a chilled environment?

My sons stims when he is happy.

Please accept your son for who he is.

@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.

I've been around autistic people often and really can feel how uncomfortable some of them are with making eye contact. I agree that it's not good to pressurise this type of behaviour. I suppose some social norms are good to learn, but not to the extent it makes someone feel very uncomfortable.