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?

There is no such thing as classic autism
Fitting Kanners original description??

@DeepaBeesKit

Biscoffee I think this is it, my friend feels she is no longer "allowed" to distinguish her child's autism (for example with the term "severe") from the autism of much more vocal communities of autistic people who, whatever it costs them, do manage to communicate, live independently, work etc.

It's not ok to say mild/severe in many circles
It's not ok to say high functioning/low functioning in some circles either

So can anyone explain in simple terms how one appropriately distinguishes these days?

On here this argument goes round and round in circles because the core is : 'high-functioning' people are not deemed to need support. When in fact they do. However 'a lot of support' and not being able to live the same life as an 'NT' is still not the same as never being able to live independently. Even 'independent' is subjective.

DP's diagnosis was mild autism. He is very lucky that his subject of obsession is something that pays well and allows him to work in an environment suitable to his nature. He struggles in a lot of ways, in relationships for example it takes a very understanding person to live with him. However he will always be able to live independently and he has his own circle of friends who share his interests.

Maybe a label that has no pre-conceived meaning in people's mind's (like a level 1, 2, 3) would be easier.

I think many people have just grown tired of explaining that if you are living independently, you can hold down a job, or negotiate health/education/transport/etc independently then you really aren’t as severely impacted by autism as the vast majority of autistics. Most autistics couldn’t dream of doing those things and cannot hide their autism.while there’s no denying your distress it’s utterly ludicrous to suggest that your presentation of the condition is severe. Surprisingly few articulate autistics have ever met a non verbal or minimally verbal autistic and yet feel they are the voice of the autistic community.

@5zeds

I think many people have just grown tired of explaining that if you are living independently, you can hold down a job, or negotiate health/education/transport/etc independently then you really aren’t as severely impacted by autism as the vast majority of autistics. Most autistics couldn’t dream of doing those things and cannot hide their autism.while there’s no denying your distress it’s utterly ludicrous to suggest that your presentation of the condition is severe. Surprisingly few articulate autistics have ever met a non verbal or minimally verbal autistic and yet feel they are the voice of the autistic community.

I agree, working in that sector i have had several parents of young adult/adults we support share their disappointment at the way some continue to hail themselves as the voice of the community when they also have no idea of the struggles their non-verbal and severely impacted family member face and assume they'd think the same as them

I prefer the low/high functioning terminology. There does need to be a way of explaining things succinctly.

For context there's me, DC and DCousin with autism. Between us we have Asperger's and ASD diagnoses. I'm at the independent end, DCousin is not and we've yet to see where DC will be. We need labels to easily explain the variations between us.

I'm also not convinced there is an autism 'community'. With such a wide range of presentations it's hard to see how anyone could claim to represent everyone.

The root problem is the continued lack of understanding of the variations of autism in the population generally and the way that most people are just more comfortable if people are similar to them. The superhero, 'be positive' and 'we're all on the spectrum somewhere' rhetoric is more damaging (in my opinion) than helpful as it minimises impact for everyone.

I prefer the low/high functioning terminology.
I don't the high functioning label means there is no learning disability, but it minimises the impact of autism on the individual. DS is smarter than 95% of his peers, yet his emotional and avoidance issues prevents him from learning, his sensory processing issues are off the chart, the summer is a nightmare with lawnmowers, hammering, road sweepers, loud DC.
The first lockdown every neighbour was decorating we'd to keep all the windows closed tightly.

I don't the high functioning label means there is no learning disability, but it minimises the impact of autism on the individual.

I don't really see it as meaning either. More, as was mentioned upthread, that it's less obvious to neurotypical people.

Living an independent life and outwardly appearing mostly conforming sounds great, but it comes at a cost that isn't minimal impact. However, that's very different from the impact of classic Kanners, for example.

The term 'autism' covers so many impacts that it's like 'fruit' meaning everything from apples to pomegranates to tomatoes. They don't look or taste the same but they're all fruit.

I prefer the low/high functioning terminology.

Low and high functioning descriptors don’t describe someone’s autism. They describe their IQ, so now to make that quite clear they would be stated (if you wanted to) as “autism with learning disability” or “autism without learning disability”.

I don't the high functioning label means there is no learning disability, but it minimises the impact of autism on the individual.
It doesn’t say anything about the autism, more there are further barriers for the individual concerned that may make both harder to overcome.

I don't really see it as meaning either. More, as was mentioned upthread, that it's less obvious to neurotypical people.
I think this is a common misconception that shows just how little understanding of autism there is even amongst people who are autistic and their families. There are many many overtly autistic people without learning disabilities (ie who are High functioning). So a significant proportion of the autistic population DON’T have learning disabilities but are non-verbal or minimally verbal and need constant care. In my experience people fail to understand that at all, and yet it’s WHY autism was first of so much interest and is diagnosed.

I'm in a few autism groups on fb and I can tell from the advice given (only autistic adults are allowed to answer) that many don't have experience with those on the lower functioning end (not allowed to say this type of thing).

My son is nearly 3 and has low comprehension of day to day basics, he is non verbal and can only communicate thirst by standing near the sink, other basic bodily functions he can't communicate. Someone with a child similar to mine posted about biting and the advice was just to tell the child to stop and explain it hurts. Oh my goodness of only it were this easy. I do think there's a lack of understanding for those who have severe communication challenges that deeply impact day to day activities.

My daughter was diagnosed as Autistic many years ago. At the time we didn't feel the actual assessment from the doctor was very thorough and she was very much relying on the reports from school - she pretty much said as much. However my husband had been quite worried about the assessment and how my daughter would feel about it all (she was only 5 or 6 at the time) and we felt that insisting on a second opinion would ultimately get us the same conclusion.

We were told 'Aspergers' is no longer given as a diagnosis but it was clear from reading material recommended to us, that this is what the diagnosis would have been in the past.

From what you have said, I would not assume the diagnosis is wrong, just that things change with your child. With my daughter, when she was younger there were quite a few meltdowns and outbursts, but as she got older these lessened and school had their procedures in place to help her manage. For a few years it felt like everything was all fine and maybe the diagnosis had been wrong. But I have realised now that my daughters issues tend to be in big group situations (like school) and when she is at home or out with us it isn't the same for her. And we are now nearing secondary school time and I am realising that there are going to be new challenges for her. I am glad of the diagnosis as it means we will be able to work more on the transition process with both SENCO teams. And I think teenage years are going to be really difficult for her on the social side of things so I am hoping school can really help with that. She has a nice little group of friends, but I have noticed some of her other classmates get quite fed up with her as they find her quite 'young' in some ways.

Anyway, I guess what I am saying is that we were in a similar situation to you, and there were a few years where everything seemed quite settled. But now we are at the end of primary I think we can see that she is going to need more support and are glad of the diagnosis.

Low and high functioning descriptors don’t describe someone’s autism. They describe their IQ, s.
True, many people don't realise this.

meganorks

I have noticed some of her other classmates get quite fed up with her as they find her quite 'young' in some ways

It's common for a lot of neurodiverse kids to have an emotional age around two thirds of their chronological age. It can make them very vulnerable socially.

It would be so much easier for them if schools, family, friends etc. could recognise this and treat them accordingly, instead of telling them to grow up and criticising them for something they cannot help.
Please reassure her she will 'grow up' emotionally in her own time, but for now it's absolutely okay to feel how she feels and if she likes things that are for 'younger' kids, that's fine.
It's another 'different is not wrong' facet of neurodiversity.

@doadeer

I'm in a few autism groups on fb and I can tell from the advice given (only autistic adults are allowed to answer) that many don't have experience with those on the lower functioning end (not allowed to say this type of thing).

My son is nearly 3 and has low comprehension of day to day basics, he is non verbal and can only communicate thirst by standing near the sink, other basic bodily functions he can't communicate. Someone with a child similar to mine posted about biting and the advice was just to tell the child to stop and explain it hurts. Oh my goodness of only it were this easy. I do think there's a lack of understanding for those who have severe communication challenges that deeply impact day to day activities.

There’s a very vocal minority of people who seem to take over all of these groups online, shout down everybody else, and while claiming that the world doesn’t understand autistic people also proceed to speak for ‘all’ autistic people. The irony…

Also apparently the DSM-V has already done the levels thing

www.verywellhealth.com/high-and-low-functioning-autism-260599

I got as far as the conflating of aggression and “meltdowns” and gave up.

It’s ridiculous to state about high and low functioning “Neither term identifies a person's: Level of intelligence…” when that’s literally ALL it describes.

This is someone who has misused the terms HFA/LFA and is now describing how unhelpful they are when misused.

I just have to address this because it’s utterly infuriating.

Perhaps most significantly, neither term identifies the likelihood of aggressive behavior. While relatively rare, aggression occurs in autistic people at all levels of severity. Even people with very high-functioning autism, who have strong language skills, can "melt down" under certain circumstances.

This just shows such a warped view of autism that it beggars belief. “Meltdowns” or more accurately becoming totally overwhelmed by stress are not aggression. Expecting a diagnosis to predict who might lash out when pushed beyond control is bizarre. It’s like observing that some victims of domestic violence will crack one day and attack their tormentors and then saying, but perhaps most importantly while we can describe them as victims we can’t tell which ones are “aggressive”. The “meltdown” is the result of torment.

My DS has non aggressive meltdowns, as do I. They are no less terrifying for that. Luckily as we both have our needs managed well (by me) we meltdown only very occasionally.

I think my son has maybe hit me once or twice during a meltdown, but the rest of the time it's like watching a person who's been cornered by a wolf. Just sheer terror.

@BlankTimes

meganorks

I have noticed some of her other classmates get quite fed up with her as they find her quite 'young' in some ways

It's common for a lot of neurodiverse kids to have an emotional age around two thirds of their chronological age. It can make them very vulnerable socially.

It would be so much easier for them if schools, family, friends etc. could recognise this and treat them accordingly, instead of telling them to grow up and criticising them for something they cannot help.
Please reassure her she will 'grow up' emotionally in her own time, but for now it's absolutely okay to feel how she feels and if she likes things that are for 'younger' kids, that's fine.
It's another 'different is not wrong' facet of neurodiversity.

To be honest, I did kind of shortcut here and say 'young' but actually I think it is a bit more than that. I think it is lovely she still likes to play with dolls and has some friends who do too. But I do worry that once she reaches secondary school this won't help her to fit in.

@doadeer

I'm in a few autism groups on fb and I can tell from the advice given (only autistic adults are allowed to answer) that many don't have experience with those on the lower functioning end (not allowed to say this type of thing).

My son is nearly 3 and has low comprehension of day to day basics, he is non verbal and can only communicate thirst by standing near the sink, other basic bodily functions he can't communicate. Someone with a child similar to mine posted about biting and the advice was just to tell the child to stop and explain it hurts. Oh my goodness of only it were this easy. I do think there's a lack of understanding for those who have severe communication challenges that deeply impact day to day activities.

My autistic non communicating biter did grow out of it, eventually and communicates "rather too well now", (growing out of that too). (Very lucky we are too)

But the idea you can tell them it hurts... (Ridiculous)

Hang in there. Things may improve.