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?

@Sailorsgirl44 if that was a HSE diagnosis I would think it is unlikely to be wrong. They are very reluctant to diagnose.
Some children with ASD found lockdown and being at home easier than being in school. Not as many large groups/noisy situations/social interactions with peers.

I know at various stages when my DS was coping well I wondered if he had been misdiagnosed but then another change would happen and I would realise he wasn’t.

If by the time he is a teenager he feels he doesn’t have ASD he can stop referring to it and stop using supports. They are all optional.

High functioning is also outdated....

Why does it matter if he holds his hands like a squirrel or talks in a silly voice in the comfort of his own home? By making him stop you are forcing him to mask when he doesn’t need to which is exhausting for autistic people.

DS does squirrel hands and funny voices, he has autism. These are some of the things he does when he's happy.

His behaviours will change as he gets older and sometimes there’s a period of time where children with autism are not particularly stressed and cope with things better.... and some things they do learn to cope with better than others.

Because he’s a child still and while his development is obviously going to be different from an NT child, it still happens.

DD2 is the same age. At school last year she was massively massively struggling - which was the impetus that made us go after the diagnosis. So anxious and overloaded with rules (made worse by a teacher who was utterly terrified of covid and had passed that fear onto the class) and really struggling to function and her executive functioning had checked out for the year.

We moved school and just in terms of allowing her fiddle toys and having a more sensory friendly environment anyway with lots of visual communication supports, colour coding etc that the school does as a matter of course - and she's functioning so much better. She's still autistic, and we still have the rigidity of routine, sensory issues and the like mainly to deal with at home - but we try to give her strategies to cope with the bits of everyday life that are hard to change, and that, coupled with a school that will try to change the bits of their side of the equation that they CAN change - and it's just smoother all around.

It's not a case of trying to suppress her Autistic parts of her personality - although sensory behaviour like skin picking we DID work to find a substitute for as it was harming her and causing endless bloody outbreaks of impetigo - but as she gets older - bits of her personality jump to the front more, and other bits step back into the background more... so things like the fear of bloody hand driers from younger years have dropped back (she tends to cope OK with loud noises once she knows what the cause of the noise IS), and things like worrying about routine and the fact it's 12.05 and lunch time is 12.00 have stepped up. It changes as she changes - same as it would with a neurotypical personality.

Yes, she (I don't want to say functions as that's implying that she has to suppress it or mask) gets on amazingly in the new school - but that's because the environment and setup is right for her personality and her particular needs and features of ASD there. She's still Autistic. She's just Autistic in a place where her and her environment fit together well at the moment.

@blueberryporridge

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.

This 100%.

He is only eight and coping well with appropriate support. The level of support he will need and how his ASD affects him in years to come could change a lot. Transition to secondary school, puberty, any major life events could be very challenging.

My son stims when he is happy/ excited by hand flapping and or bouncing. I read something from a now adult who went through ABA where they discourage stimming. The now adult said that in order to stop stimming when excited they can’t let themselves feel excited because otherwise they stim. I thought that was the saddest thing I ever heard and have felt strongly against ABA since.
OP when DS was a toddler he lost his absolute sh*t if I handed him a broken biscuit or if he got one tiny drop of water on himself. He grew out of it. He has grown out of a lot of things over the years. As one difficulty has faded sometimes a new challenge arises.

Thanks for all the interesting feedback.. Its interesting that definitions and descriptions etc are always evolving.

I did think that the assessment wasn't that thorough.. I feel that if his Dad had been interviewed and not me that he would have given a much different picture - I remember and notice a lot of little things. I also think the Teacher did the report a few weeks into the school term - she said herself that if it had been done further in to the school year that he would have settled a lot more and her report may have been quite different. And my son was quiet at the assessment with the psychologist but I think he was nervous and wouldn't usually like the kind of role play games she did with him.

We'll continue to take any support his school offers - it's a great school. My son does find life a lot easier these days so hopefully that will continue.

Don't ever tell your son to stop stimming, that is the worst thing that you could ever do. I'm actually disgusted.

I'm autistic.

He isn't growing of it, he's learning to mask.

Saying someone has mild autism is just another way of saying they are good at masking.

Masking is learning to not let your autism affect others.

But masking can cause many mental health issues and trauma responses. This can cause deep self esteem issues

Society needs to find a way of accepting autistic behaviour, not trying to mould autistics to behave NT just be cause our autism make NTs uncomfortable.

Dear OP - I think your post is indicative of the leaps and bounds that have been made in widening the 'understanding' of autism within educational provision. So far, you and your ds's experience has been positive, which is great.

However, this outcome is not one shared by the majority, no matter what country they live in, hence you will get less agreeable posts than mine.

I was actually asked today "Has SEN Provision for Primary Schoolchildren improved". And I replied "Yes it has". Because it has since 12 years ago when permanently excluding autistic 7 year old ds was the only provision available.

We're not bitter, just even more solid in our strength that either of us can get through the bad stuff that life throws. To anyone.

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.

Why isn't he allowed to do it though? Why would you even tell him to stop?

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?

The squirrel hand thing is affectionately known in the autistic community as "t-rexing" and I do it too. As others have said, please don't tell him not to stim because it really does fuck you up. My mum got on at me constantly for my stims, tics and general autistic behaviour and it caused me to furiously mask my entire life.

In fact, I masked so hard I actually wasn't diagnosed at my NHS assessment earlier this year. I then did a lot of research and soul searching, spoke with autism specialists and was diagnosed very quickly during a private assessment where I unmasked fully. I literally cost myself £900 by masking my way through the NHS one, where I smiled and engaged and treated it like a job interview because society has always told me to be more likeable (aka neurotypical). I will also say, however, that the private assessment was INFINITELY more thorough than the NHS one, which felt very cursory and superficial.

My mum is very angry and defensive since my diagnosis, insisting that I was "perfectly normal". I had friends, I can make eye contact, I can crack a joke (don't understand other people's jokes though!) but there were a million other traits that she stamped out of me by the time I was your DS's age. My mother hasn't seen the unmasked version of me in 20+ years.

I'm now 31, recently diagnosed with ADHD, autism and dyspraxia, and I finally feel like I have permission and validation to be myself. Unmasking is so liberating and I'm no longer on the edge of meltdown all day.

@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.

I do voices and one trait that I display alllll the time is echolalia, which is repeating random words or phrases out of context.

I watched a guy reviewing pizza on YouTube a month ago and I haven't stopped saying "pizza pizza!" in a stupid voice since then - I'm annoying myself.

Lots of children learn to mask, especially if they are high functioning. This is why your son is developing other coping strategies, such as not socialising much with other children he considers friends and putting his hands in front and vocal stims.
It's not easy to be diagnosed with autism, and it will present differently as he gets older. He obviously needs the provision if he is coping at school, he is coping because of what he has in place to support him

[quote Hoardasurass]@Ponoka7 no we don't have to mask and saying someone should is wrong and really offensive. If anyone has to change its the people who judge autistic people not those of us who are autistic.
I was forced to mask as a child and it caused me so many problems and really damaged my self esteem and self worth[/quote]

We've just got a diagnosis through for my DD, years after starting the process. The school kept saying to me "she seems fine!" To which I could only respond: "she does, doesn't she? Do you have any idea how hard she works to seem fine??"

No he was probably not misdiagnosed.
Read up on autism, and aspergers. The changes you have made are helping him.
Just because he can hold eye contact, does not suggest misdiagnosis to me.

My now 18 year o,d was almost excluded at age 11, until support was put in place. He is now living in his uni halls of residence, coping with it all, but with support from a mentor. He can hold conversations, chat away, is very popular with other students, has an acerbic wit, b it he excludes himself in his room when it gets too much and because he smiles when he is anxious, people think he's ok. He masks by smiling at people.

Sailor - I remember when nurseries and childminders questioned my son's behaviour, usually finding him 'challenging' - I would defer these questions and put them down to character traits, most probably inherited from me.

It all came to a head when we moved a few miles, and to a new small primary school; it was a change too much for ds and he couldn't adapt anymore, not helped at all by the school who viewed his behaviour as a product of 'parenting deficit'.

I had to take my head out of the sand, stop being in denial and accept that my son's autism was a label he had to wear, like it or not.

I'm old enough to know that 'education' wasn't such the one size fits all thing it now is, you could be a bit different without being a problem, not that most recent memories reach that conclusion.

DS is now nearly 20, he made it through the ed system enough to get the prerequisite qualifications and far removed from the 'little crim' some ignorant, young, inexperienced primary school teachers descibed him as many years ago.

He's on a much needed break from being a square peg bashed into a round hole.

Leave things be for now OP, be aware that a 'change' might provoke some negative behaviours. I hate labels myself and neither ds nor I wear ours.

I also disagree that there’s such thing as ‘mild autism’, I think it is being used because the diagnosis of ‘Aspergers’ has been ditched. My DD’s both have ASD diagnosis, one diagnosed with Aspergers (she’s now 17) and one with Autism, both very different, the main difference being Dd1 has no speech delay, dd2 is almost non verbal. One has survived mainstream school whilst the other is in a specialist school. The spectrum is huge but I don’t really believe there’s a mild and severe end (it’s not that simple).

My ds was diagnosed at 3 (also in Ireland) and for years we doubted the diagnosis as he just didn’t fit the profile being described. Don’t get me wrong, I could see he wasn’t neurotypical, but I wasn’t seeing the autism.

It’s become more apparent in the last couple of years. Around 11 it was clear he was struggling and looking back I definitely think he would have benefitted from more support earlier before things came to a head.

I’m very positive about neurodiversity and happy to accept him, and everyone else, as they are. One of the things I hadn’t anticipated was how differently behaviours and preferences are viewed depending on whether SN are perceived. If you’re seen as neurotypical, at best you’re being awkward and at worst you’re deliberately misbehaving. Once you use the A word, all of these things can be accommodated.

One of the things that stood to ds, was that I was always looking at him in terms of abilities (to nurture) and struggles (to work on) the same as any child, so we’ve helped him over the years to learn strategies to help with eg transitions, and adapted to accommodate some of his needs eg a quiet retreat when we have guests. You don’t necessarily need to buy into the diagnosis to figure out those things and I take a very similar approach with my NT dd and myself for that matter. But having the diagnosis unlocks access to services (such as they are) that can help and support and understanding in school.

As ds has got older, 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.

Btw did they write “mild autism” or “autism with a mild presentation”?