Guest post: 'We need Autism Awareness Day because my son is still labelled 'naughty''

[MumsnetGuestPosts]

Raising Jonah has been difficult, and perhaps the hardest part has been other people. When Jonah has a meltdown, and in his toddler years, these were frequent and epic, it was hard not to feel the acute sting of social judgement.

I felt the hot shame of embarrassment every time an incident happened in public, and they did so with monotonous regularity. I tried not to blame people for judging - as caring for him took its toll, my patience unravelled, too, and, at times, so did my parenting skills. I was depressed. Sometimes my self-control dissipated. I became withdrawn as social interactions became increasingly fraught and stressful.

Now I've had a chance to think about my feelings during that period, I've come to realise the reason I felt so judged was because I frequently judged others. Really, I felt that if people were calmer, more consistent, gave in less, and ensured their child had enough sleep, then they would have fewer problems with their children's behaviour. And yet, here was I doing all those supposedly ‘good’ things (as reliably as you can when you haven't had a good night's sleep in god knows how long), and my son's behaviour was spiralling out of control. It's hardly surprising I felt powerless and angry.

With Jonah, my reactions worked like a computer algorithm. If I got cross, his behaviour would get worse. Sometimes, on the odd occasion I shouted, he would appear to 'short circuit'. I remember losing it once when, as a toddler, he swiped a made-from-scratch meal off the table. The next week's meals were also eaten off the floor. Sometimes, it took the resolve of a saint to ignore regular bad behaviour.

We finally managed to get a diagnosis when Jonah was six, and it did much to alleviate my frustration. It absolved me from the judgement I felt I was under because my methods - routine, positive reinforcement, healthy food, plenty of sleep - which I truly believed in, weren't always as successful as I hoped.

Jonah is now a mostly charming nine-year-old, who takes the bus to school on his own in the morning, devours books, crafts impressive things in Minecraft and is top of his class in maths. At home, his behaviour, while not perfect, is pretty close. He engages with me before bedtime, remembers to say hello and goodbye, takes an interest in how my day has been and empties the dishwasher (although not always without a few grumbles).

But this comes with its own pitfalls. As his behaviour got ‘better’, I assumed I would feel more comfortable about his future - but actually, it's the opposite. Now I worry that a lot of people who don't know Jonah will struggle to see him as anything but normal. Which means, these days, he's often just labelled as ‘naughty’.

Over the past few terms, Jonah has increasingly been getting in trouble at school. A change to his routine can cause his behaviour to spiral, and his class are going through a raft of changes - new rules are being brought in, his teacher has left (along with the head) and he has had a steady flow of supply teachers. He finds it hard to interact with his peers, too, often talking ad nauseum about subjects that might not be all that interesting for the listener. He gets too close to people, and the conversation is often one sided. His bilateral coordination issues means he is not so great at football - but, where other kids are told “unlucky” by their peers if they fluff a pass, Jonah gets laughed at. He has not yet learned to ignore things he doesn't like, and he can give pretty spectacular reactions. Sometimes he sees red.

Jonah is being marked out as a troublemaker, and it bothers me. I see his frustration in the drawings he brings home - Jonah, drawn as a computer figure, armed to the teeth and battling his demons in pools of blood. These aren't the drawings of a happy child, I think. At nine, in his black and white logic, he has told me he would have preferred not to have been born, because he finds life so tough trying to be what others want. This is, understandably, hard for me to hear. I find myself worrying that perhaps I could have done more, and managed his behaviour differently when he was young. Sometimes, it's difficult not to feel like you're to blame.

But I try to remember to give myself a break - left to his own devices at home (and given time to do what he loves, too), he's a confident kid, who has learned to make working machines with circuits made from red stone on Minecraft, coding them with a circle of online friends with whom he interacts from the safety of Facetime and iMessenger. And I am proud of him - and proud of myself.

The real world isn't very understanding, though, and I worry about his future - what happens if he gets his wires crossed with a girl, refuses to sit an exam, or has a temper tantrum with his boss? In some ways, the more Jonah can “pass” as normal, the more likely it is that he will end up in trouble. I can think of countless social perils that await him. I will be there fighting his corner, just as I always have, in the knowledge that his behaviour can be entirely predictable, when he's given the right environment.

This is why Autism awareness is so important. Society needs to become kinder - not just to people with autism, but in understanding that all of us have challenges and our behaviour is often the result of a complex set of circumstances. But until the world understands that it is really is harder for him - to get the right end of the stick, deal with situations, smells, emotions, and conversations he finds uncomfortable - he will have to be ready to cope with whatever battles lie ahead.

[specialmagiclady]

Thank you for this. My son is amazing and even the autism outreach lady said she couldn't have picked him out of his classroom. But without autism awareness, the times when he is acting out through stress might make him just a "weirdo". I pursued the diagnosis so that he could hold up a sign, not have a label slapped on him.

[reprobatemum]

Yes, exactly!

[OneDecisionMade]

Thank you for your post. I wholeheartedly identify with your feelings as a mother of a son with Asperger's. As if its not heartbreakingly hard enough to be his mummy, its made a hundred times harder by the social isolation and judgement made by parents who have no comprehension or empathy. The irony of the latter is not lost on me!

[noprizesfornormal]

Yes, I relate. And 'thanks' to those kids who mocked my son at the cinema a few weeks ago. The cinema may be autism friendly but people aren't always.

[Liberated71]

I'm really struggling to get the medics to diagnose my son. Every other professional who has met him describes him as autistic but the consultant just won't do the test. Maybe doctors need autism awareness too!

[MrsEvadneCake]

Autism awareness would stop ignorant comments like the one we received recently about training my son "like you train dogs" out of his sensory issues. Each time I look at my DS I feel such pride at how much he achieves and yet I worry about how much he still has to face.

[Fannyupcrutch]

My son is 16 this year and is also autistic. We had a nightmare 6 years between 2-8 and then very rocky transitions from juniors to seniors. We finally found a school that works for him at age 12 and the change is amazing. He is now a relatively out going young man with a firm circle of friends that he can relate too. He has even started extra curricular activities and is taking part in 3 stage productions this year. We are expecting him to do very well in his GCSEs and then to study maths and science through college and uni.

At one time I wondered if he would ever be able to live alone, now its the opposite. Just last week he told me that realistically he will be leaving home when he goes to university and will probably never live with me again after that as he will be working and travelling! But it still really worries me that people take advantage of what they perceive as the "less able" or "different". My son has very frequently been victimised over the years and it kills me to think he will wont have me to protect him but I will always be there for him no matter what. We do need to change peoples perceptions regarding the neuro different conditions.

[Vickisuli]

I am really interested in autism from the point of view of an outsider, and a teacher. I do feel for parents of children with autism and can imagine how frustrating it is when people think they are just naughty.

My question is, presumably, children with autism can also be naughty sometimes, just like all children. How do you / should people deal with that? If you assume that any unusual or unacceptable behaviour is a result of the condition, then do you never punish or teach that certain behaviours are wrong? How can you discipline a child with autism effectively when they are really misbehaving knowingly?

[trubags]

My Aspie son is 25. I recognise all your fears and we've had to cope with and challenge a few that you anticipate. What really made a difference for us was getting a place at a Autism-specific college (16-19yr olds). The understanding staff managed to help my anxious boy who would literally wet his pants when stressed evolve into a young man with coping skills and, incidentally, a love of being on stage in front of an audience. DS has had a few jobs and voluntary positions and is able to function. Pretty damn well in an environment where he's shown exactly what to do and what's expected of him. Sadly two of his past employers failed to take his Aspie shortcomings into account and let him go. They both claimed ignorance of his Autism DESPITE it being on his c.v! He currently works as a Domicillary Carer and is very fond of his clients and proud that he can make their lives a little easier. He still gets anxious about things like public transport and new places and, at home, we get a few meltdowns BUT I've always had expectations of him and we've worked really hard together to make them happen. It took 7 years to get him to travel alone but we got there in the end! There is hope for all our Aspie/Autistic kids out in the big wide world.

[reprobatemum]

Good question. Firstly I would deconstruct the word naughty because it's so bound up with concepts of morality and ideas of good and bad that frankly need debunking. No child is bad. They react to thier circumstances, environment, test boundaries, act up for attention, and generally need managing to control their emotions. If youcan handle all that, no child is 'naughty', which is why I say parents are responsible for their child's behaviour, but most of us are not always responsible for our own. The problem with ASD children is they find it hard er to control their emotions, and find every day situations much more stressful. This means they 'act up' more than the average child, It's hard for a parent no to react negatively under these circumstances, and like all children, ASD kids learn to press their parents buttons. Sure they can be annoying if they know it gets them attention, which is why tactical ignoring is a really useful technique not just for ASD kids but for all children. So before you label any child 'naughty', consider the environmental social and genetic issues they may be facing and then reconsider how you react to them, esp as a teacher, judgment has literally no place in the classroom. Or anywhere, but an idealised world only really exists in Minecraft.

[ChaiseLounger]

I wouldn't wish the 'parent of an autistic child' on anyone. Is isolating and soul destroying.

No one who wasn't one could know how awful it is.

[ChildOfGallifrey]

I have gone from a timid, wouldn't say boo to a goose type to mastering passive aggressive head tilts and standing up to figures of authority all because my son needs me to. Because no one else will. Because too many see him as an easy target because he only sees the good in people and only ever sees the world as black and white.

Awareness is good...acceptance is great.

[reprobatemum]

Lol - you may be right about that too: we are dragons cause we have to be!

[Nelly2015]

I have ASD and other mental health problems and I know I wouldn't be where I am today if my mum and dad hadn't fought in my corner when I was a kid.
All your DC are lucky to have you guys.

[OneDecisionMade]

Vicki, as a mummy of a little boy with ASD (Aspergers) and as a teacher, I'm able to answer your question simply in my experience and having known a few dear friends whose children also have ASC:
Children with autism are generally assaulted by life in sensory ways that we cannot imagine.
It is this that often leads to meltdowns and to, what look like, engaggetated reactions old unruly behaviour.
Unfortunately, while neurotypical children would generally stop being naughty, connect a consequence with their behaviour and not repeat said behaviour again, a child with ASC is simply unable to make these connections. In fact, consequences and discipline in the traditional sense (being told off, bejng sent to their room, having favourite things consequences or promised treats denied to them) inevitably lead to enormous confusion and distress (anxiety that is extreme).

We parents work soooooo hard to implement methods that DO work instead, such as social stories, etc. Anxiety underlies most difficulties of children and adults who literally suffer from the condition of ASC.

The government charges us as teachers to be responsible for the care of children with SEN who are in our care (in our classrooms). Your question is essential and my response, I hope, highlights just the beginning of enormous and invisible differences and difficulties that are essential to be understood. Your understanding can either help of hinder a child's care.

The following resources that have been funded by the Department for Education for use in ALL schools can be found at

//www.autismeducationtrust.org.uk

There are resources for 3 age groups - so you need to look at the resources for 5 to 16 years.

There are 2 in particular which will be of interest to you and the school

AET Standards - this is a set of statements - to help schools know what needs to be in place for children with autism - if you click on the part which says Download - the document will download and you can print it off - when you are online - you can access the resources and save any to your hard drive which you can also print off.

Another resource can be found at

//www.aet-idp.org.uk

Go to this website and click on the Inclusion Development Programme - and you will find on line study materials on autism for early years and primary and secondary (as well as other resources e.g. on dyslexia)

In the autism programme there are 8 units on different aspects of autism - and each unit has about 17 screen pages - some of which have video clips and others text and photos. and there are resources attached which you can look at and download.

Hopefully, these documents will give you a better insight into children with autism, their needs, difficulties and how you can and ought to be helping them as a teacher and school.

[ChaiseLounger]

One Decision, I looked at your link but I'm afraid I didn't really find it helpful. Am I missing something?

It is too basic. It's like an idiots guide. Sit down, find out what the pupils problems are, ask EP and senco. Make the child's passport, discuss who this information will be shared with.

No shit Sherlock. This is what should be done? Really? And pay the government 3 million to do this survey? To come to these conclusions? That a 3 year old could have probably concluded.

our intelligence is being insulted.

What if your school does nothing? Insists the child is "fine", when they are clearly not.

What happens then?

[OneDecisionMade]

It's basic stuff. It was intended for Vikki. No need to be insulting.

[FastForward2]

Vicki, your assumption that autistic children can be sometimes deliberately 'naughty' like all children needs to be challenged.

IME they appear naughty usually because they have not understood waht is expected.

e.g. Unfamiliar uncle says: ' if you lean back on that chair again .....x will happen' so child immediately tries to lean back on chair. It would be better to say 'you must not lean back on the chair as it worries me that you might get hurt.'

So in a classroom I think when child appears naughty just re-explain what is expected, using clearer language.

Hope this helps, I dont claim to be expert but this is what I find works In family situations, I am not a teacher.

[Spinnerbear]

My six year old son has high functioning Aspergers. He manages at a normal school, but had a lot of problems last year. I put it down to his teacher at the time, who was very young, and kept complaining about Ben having no attention span and being naughty, although she knew that we were having him assessed for Aspergers, which had been picked up when he was about 3. This year however, his teacher has a history of working with autistic children, and she has two of her own at home, both of which are on the spectrum, and Ben is really blossoming. We still have problems, he had a major melt down on his first school sports day, and I ended up having to take him home, but I am lucky that his primary school is very supportive. Most of the children adore Ben, they look out for him on the playground, and play with him. There are always a few ignorant brats who make fun, but the school does not tolerate this, and as I said, the older children look out for Ben. I think that things are getting better at the schools, at least in Scotland, people are better educated, and the schools are looking out for the signs. There is still much to be done though.

[springalong]

thank you for thoughtful post. My DS is not diagnosed (his dad doesn't accept there are issues). So it worries me - he has been labelled as naughty since nursery. Everyone can see there are issues so he is labelled as immature. A label that no-one needs to take action over. I worry dreadfully about his future. He doesn't understand consequence. Recently we have been discussing consent. He told me about kissing a girl, so I talked about that needing to be something that both of them would want to do, not just him. I watched as he totally failed to understand that he couldn't just do what he wanted to. He is 9 - he MAY be forgiven now but in 5 years time? Very scary.

[Vickisuli]

Thanks to the last poster. Although I do appreciate completely the point that ASD children may be frequently thought to be being naughty when they are not but I find it hard to believe they are NEVER actually naughty. I certainly don't know any child (or adult!) who has never ever done anything they know to be wrong.

What I am saying is obviously some behaviours that may be symptomatic of the condition may also be unacceptable in a classroom or other situation eg biting, violence, so clearly whether the child is being 'naughty' or showing a symptom of their condition, measures need to be put in place to prevent this behaviour. It's not like you can just say, "Oh well he's autistic so we'll let him go round punching other kids"

[JugglingFromHereToThere]

I think things are gradually getting better in our generation regarding acceptance of neuro-diversity. Many more children are recognised as being on the autistic spectrum now, including Aspergers, than were when I was a child. I do wonder whether someone close to me has un-diagnosed Aspergers. I think I may have some attention deficit traits myself which have caused tremendous challenge through life - though obviously these things are relative.

Hugely agree that society and all of us need to be kinder, more tolerant, more flexible, and understanding towards one another's behaviour. I've found the working world is particularly inflexible - seemingly so often unable to build on strengths in a constructive way.

As I've mentioned with the ADD there are other types of neurodiversity too, and of course other additional needs including our mental health differences, where we still have a long way to go in developing acceptance and understanding

[DishwasherDogs]

Vicki, I'm fairly new to this so may have it wrong, but ds will be naughty deliberately (or at least it feels like it!) but there is always a trigger, just like non-naughty ASD behaviour, and discipline is still a tricky area. I can't discipline him like my other (NT) dc because it will escalate, if/when he is disciplined in school, it is usually missing part or all of break time which will always cause a meltdown when he gets home.
He will copy behaviour from other dc, but does it louder, so looks like he's the instigator.
At home we do the 5 point scale, which works on ASD behaviour and naughty behaviour. He knows there is a set pattern to what will happen, and it helps him to recognise how he's feeling so prevents a lot of meltdowns as they can be nipped in the bud before he reaches tipping point.
If you google the incredible 5 point scale, there might be something useful there to help you in these situations. I would also suggest you talk to the child's parents, they will know the child inside out and probably have a discipline method that works for the child.

[peppajay]

My son is currently going through the diagnosis process for aspergers but unfortunately my dh doesn't believe in autism- it is just an excuse for naughty children. My son is a wonderful boy and I hear done many compliments and positive comments about him as he is very quirky and happy and he has a fantastic sense of humour but he also suffers with anxieties and irrational fears- made far worse by having a father who has no empathy or understanding of autism. He refuses to read any literature on it or attend any appointments. Any child that screams or cries in public is just naughty- FACT. He doesn't understand when people give us compliments on what a lovely funny boy he is - he even asked his teacher at parents evening why she as well as me soothe him when he is anxious and having a meltdown!!