From:
Sent: Thursday, 13 July 2023 6:49 PM
To: Committee, Education & Health Standing laehsc@parliament.wa.gov.au
Subject: Submission for Inquiry into support for autist children in schools
Submission for Inquiry into support for autist children in schools
PLEASE KEEP MY SUBMISSION ANONYMOUS
Hello
| didn’t know about this submission until a short while ago but felt it very important to make a contribution,
however rushed. Would have been good to have had more time or for this to have been circulated more widely. |
will just talk about my own experience as a mother to an autistic girl, who has traits of PDA.
A huge factor affecting the apparent prevalence is our ability to recognise autistic females who go largely undiagnosed because of their ability to mask. This was the case for us — my daughter wasn’t diagnosed until year 9 and by this point, her ability to cope with school, deal with anxiety was unbearable,. If it weren’t for the School
Psychologist we had (this was an Independent Schoo! iy i” she would not have been diagnosed.
We educated ourselves a lot from this point but anxiety and regulation issues had already surfaced and this was
already having a massive impact on our daughter’s mental health. My husband and | are university educated, we run
our own business, we are financially well-off, and | am very good at finding the right services at the right time — |
have very strong networks. HOWEVER, if our experience was traumatic, completely chaotic, desperate, and at times unbearable, how does any other family cope?
We were very fortunate to be extremely well-supported by the School Psychologist who happened to have worked
in the autism space and so understood a lot more than we did. If it weren’t for her, | am in no doubt that we would
have had to leave the school.
She helped us get through hospital stays, anorexia, complete emotional dysregulation, suicide attempts and the list goes on. Families MUST HAVE a support person that can LISTEN to the child and the family, and work with the school to make the necessary accommodations.
A few points that were important for our school to understand:
-
Unfamiliar and unpredictable = anxiety Familiar and predictable = not anxious
-
Labels don’t help ‘low-functioning discounts or dismissed a person’s strengths and capabilities. ‘high-functioning’ discounts or dismisses the person’s needs or struggles
-
Deficiency in executive function is her disability.
-
Anxiety is the issues not autism. And being smart doesn’t make it any easier.
-
Aloneness doesn’t = loneliness
-
Acting ‘normal’ is draining. (even for NT’s)
Schools MUST work out how to operate in a much more flexible way. It used to be that the big concern was the ATAR because that was the only pathway to uni but this is not the case. The amount of focus and stress forced upon students because of the system is ridiculous and unhelpful. I had to quit my job to look aŌer my daughter and help get her through high school by taking on all of the execuƟve funcƟon aspects of school (planning, organising, Ɵmetable, study prep etc)
My daughter ended up being placed into MH Unit during ATAR exams because of the immense pressure she experienced. She had been accepted to University based on her year 11 results and just needed a WACE to be accepted. Luckily we were able to get this because she had been hospitalised. But at what cost?
As a parent I needed to support her based on this: how far do I let her mental health deteriorate which could easily have ended in suicide – to sit her ATAR exams? Is this, as a State, what we think is acceptable? I am one but I have MANY friends who are dealing with similar issues.
To conclude, aŌer a traumaƟc experience at high school, my daughter has just achieved a high disƟncƟon in her first
semester of (studying remotely from home). She moved over to a few months ago and at 19 is now
living independently, studying at university and working towards some of her very aspiraƟonal goals. This is despite having to have worked with our high school educaƟon system.
It was only through me being physically present and working on geƫng through school almost fullƟme that we ‘succeeded’. I was the one that had to coordinate CAMHS with School, I had to email certain teachers daily, I had to show up at school at lunchƟmes to feed daughter, I had to be at school at Ɵmes during assessments in case it got too much, I gave presentaƟons to school staff to educate them about auƟsm and my daughter.
This is what the school system needs: Ability to act flexibily Support staff so that teachers can teach and there are others to look aŌer wellbeing Low‐sensory spaces for students to regroup in (quiet, calm, low light, somewhere that can be monitored)
Predictability
Listen to families and what they say they need Flexibility around assessments Support systems for parents PD on auƟsm ADHD, anxiety Enough supports to assist the under‐resourced school psychs Parent supports / parent groups
The below is a Carer Statement I wrote while my daughter was at school.
This Lived Experience is important – our words must not conƟnue to be on deaf ears. For anonymity my daughter is referred to as L.
Our focus is on our daughter and what she needs to become independent and reach her ambitious goals, and it feels self-indulgent to talk from my point-of-view. However my husband and I need to be our best selves to be able to continue this intense journey, and by any measure it has been excruciating.
I am used to having a highly anxious, strong-willed child. She has always been this way and we are used to dealing with the times of intensity when anxiety is high. She rarely initiates a phone call, we can never be late to pick her up, it’s hard to get her to agree to come out with us, and when she was able to do organised sport, we would always have to stay with her.
As she became more anxious, I thought for a long time it was my fault. The wheels really came off at high school. We support her a huge amount, which is taking its toll on all of us including her brother. We walk the balance of being right there for her, with helping her to be self-dependent.
2
L was only diagnosed a few years ago with ASD, as well as having a very high IQ, so there has been a steep learning curve for me.
We have had the darkest days over the past few years though. Sometimes I can’t even tell my mum or close friends what’s happening because it’s too shocking and I know they won’t understand. To anyone else, she is the most kind, polite, smart, engaging teen – this is absolutely true when she isn’t highly anxious or when she is doing a good job masking her anxiety. When L tried to kill herself twice in a weekend, I got through at those times by just doing what I had to at each moment. But last weekend, when she impulsively put her fist through a large glass picture on the wall it felt almost as intense as the suicide attempts. There is an absolute panic in the moment - what is going to happen next? There has to be two of us home when she is dysregulated because of the aggression and impulsivity.
When dysregulated, I am genuinely scared of what she might do. To herself. We’ve been through multiple suicide attempts, self-harm with cutting, or pen stabbing (100’s of marks all over her legs), running away, and ceasing to eat. To her brother – she recently through an iron at him because she was already anxious and then she found that he’d eaten ‘her’ yoghurt. To me – she threatened me and herself with a knife a short while ago. This is completely impulsive behaviour when she has reached a heightened, state of anxiety and overwhelm where she can’t regulate anymore. For my husband the most horrific times are when he’s had to physically restrain her – literally having to sit or lie on top of her so she doesn’t hurt herself badly. This happened a few months ago and he had to restrain her for nearly an hour until the ambulance came as she would not calm down.
Now though, we have a much better knowledge of what does work. We have to continually focus on keeping anxiety low. We use loads of ways of doing this. But if we can’t do this, we have huge escalations and I don’t think as a family we can cope if we go through much more of this.
Our marriage certainly won’t survive if we can’t keep L motivated to keep moving forward every day, and emotionally regulated and keep anxiety as low as possible.
Everyone says to put the oxygen mask on yourself first – but this is hard in survival mode. But L’s moods can change within an instant, so even if I organise to go out with my husband, if she is mildly dysregulated we can’t leave her alone, especially with our son. We can’t easily plan to take her to someone’s house for them to look after because she is insulted by this and much calmer at home in her room. And so we are always on call.
We’ve found lots of ways of managing. On weekends my husband and I do something one on one with each child. We can’t do activities together as a family – we never drive in the one car. It’s normal for kids to argue but if an argument starts, and Leila becomes dysregulated, there is a good change she will impulsively open the door while at speed. This has happened on numerous occasions.
For family meals, because of L’s eating disorder, she doesn’t eat with us. All of her meals are eaten in her room. We re working towards eating with her as a family but this takes planning and depends on the day.
Another way we have adapted as her parents is that her ‘team’ including mentors and clinicians and us as her parents, take on very specific roles. We stay in our lane. My husband does the behaviour management which means that he has to have his phone on at all times and answers it if it’s me or the school even during client meetings. He has often had to leave work immediately to get to school if she has become dysregulated, or if I’ve been driving home with her and have had to stop the car before she has jumped out. In the past when this has happened, it’s led to her taking flight and running off and we’ve had to get police involved in looking for her because she is so impulsive.
The last few years have put a massive strain on us. My husband and I run our own business with 11 employees. Last year we had to restructure our business, bringing on a CEO at large expense, so that I could be at home fulltime. This has personally, professionally, emotionally and financially been incredibly challenging but it’s what L has needed. I make sure that there is as much calm at home (tidy house, plenty of foods that L eats, often sorting out L’s desk, planning her homework, planning her day at school, coordinating doctors). L needs help organising every aspect of her life.
We are very aware though, that L finishes school next year, and it is so important that she builds her skills of independence and communication now so that she can reach her goals – she’d love to study at a top university overseas.
Having the mentors and the support of the clinicians has been life-changing. We use this time (usually about 8 hours per week but more during study period where her daily schedule is more unplanned and therefore she’s more subject to overwhelm) to help her build the skills that a 16yo needs to have so that she can have an independent life. Group programs are not an option for her unfortunately.
A Smooth Day in the Life
3
This is an average day, when everything goes smoothly - the routine and schedule stays and there are no changes or unusual activities that have to be planned for.
On a typical school day, L wakes up at about 5am as she doesn’t always sleep particularly well. She goes through to the kitchen to make a breakfast that she would have been thinking about and planning the day before. She’ll take her breakfast back to her room and eat it sitting on her sofa. She’ll stay there, looking at Instagram or you tube – sometimes it’s playing thousands of games of Solitaire, depending on her repetitive behaviour of choice at the moment. This week she’s become completely obsessed with the protests and riots in the US. She reads the news, watches the socials, listens to the radio and rants non-stop about how horrendous Trump and the police over there are.
will come through at 6am to tell her it’s time to get dressed for a walk. They have a very particular order of going for an hour-long walk. They always go out the back way, follow the same route, and come in the front door. It is good for anxiety-reduction and it’s a good opportunity for L to rant about anything on her mind (a one-way only conversation), or for them to talk about current issues she is passionate about.
When she comes home she will get dressed, do her own hair – though this can take a long time if she can’t decide how to do it that day. L makes her own lunch now. Again she is very specific about it, often measuring every item. There will be huge anxiety if I don’t have any of her foods. She puts everything into little boxes and takes it back to her room.
We give her the morning medication.
She will pack her own bag but we both then check her room and her desk to see what she’s forgotten. We do this without her noticing us doing it otherwise it is an insult to her intelligence. But if she can’t find something she will immediately get anxious and demand help.
I give her a printed A4 sheet, colour-coded with her timetable for the day. It includes times, the subject, anything she needed to remember, and any mentoring/appts after school. I prepare this every night.
Once L has done these things and is ready for school she will go back to her sofa and read on her phone.
Dad will go through and give her a 15 minute and maybe a 5 minute warning. He’ll then go and tell her they’re ready to go. He’ll often hover, without her noticing, at her doorway so that he can smooth the transition to the car. Dad drives L to school every day (30 minute drive) rather than her getting a train as it helps keep her anxiety low for the start of the school day.
L generally goes to all her classes. She does 5 instead of 6 subjects so that she has a rest period every day. There is a specific, strict protocol that L follows for the instances that she feels too anxious to be in class or has a problem. When she ends up at the wellbeing area we get a call. The receptionist knows what to do and L is whenever possible put in to the same room every time. The school psychologist manages L. This involves leaving her alone as much as possible to regulate. Usually there will be phone calls to work out whether we need to come to school straight away to bring her home – we try to do this if we think there is going to be an escalation. We keep her PRN medication at nurse station and if needed they will bring it to us. We used to go and get it but find that L can’t be left on her own while we get it if she’s dysregulated.
In class L’s behaviour is always very very good. She always does as she’s told by the teachers as she’d be too nervous of being told off. Group work doesn’t work – she will either get frustrated at the others for not working hard or doing this ‘right’, or getting worried about her results, or taking over the group completely. Autistic people generally don’t operate well in groups – it is not how their brains are wired and at this stage we haven’t put a lot of resources in to turning this around because there have been other more urgent issues. If a concept in class is not well understood by L she won’t ask as she doesn’t want to be seen as not understanding something. In this case, when we come to talk about it at home, we will often have to stand in and email the teacher for her.
After school, L walks to the train station on her own and gets the train. On the train she uses headphones and she texts me when she gets on. I then collect her from the station. I can’t be late – even if I’m a few minutes late L will become immediately anxious and this can easily turn to impulse behaviour which is dangerous. I barely talk to her in the car. She is always exhausted after a day at school so I don’t ask questions about her day.
When we get home L will get something to eat and she then has downtime. She has 1 hour of time alone in her room where none of us are to interrupt her. Afterwards she sometimes goes for a walk or she’ll stay on a screen on the sofa.
4
Dinner is at 6pm and because of the eating disorder, L makes her own meal. She has either 3 fish fingers, or 1 frozen fish or chicken fillet, she has a cup of vegies and maybe some bread or potato. Again she eats in her room. She sometimes puts the food back in the fridge but won’t put dishes in the dishwasher because she can’t easily tell if the dishwasher is full of clean or dirty dishes and she won’t hand wash the dishes.
L’s recently taken on doing a chore. She has started folding the washing which she finds very relaxing. The folding is meticulous – all t-shirts folder the same size, all underwear folded the same size. This task takes a long long time because it has to be so precise.
After dinner, dad will go through to help her work out what homework needs to be done. She is a huge procrastinator because she avoids anything difficult or stressful, and takes a long time doing the tasks that she enjoys. She isn’t able to work out what should get done first, and how much time to spend on any task. Her executive function skills are very low.
For support between school and bed, we have had a lot of success with getting support workers / mentors in for an hour at a time to help L with some of these executive function / independence skills. A few evenings per week we have a few different people who have various strengths. The benefits also include practice with socialisation, communication and gradually building her capacity to complete tasks on her own from start to finish. This independence is very important at her age.
When she’s had enough she’ll retire back to her sofa to watch Netflix and be on her phone at the same time. If she doesn’t feel up to doing homework she’ll spend the entire afternoon and evening on her sofa. This is where she feels comfortable. Normally she’ll come through for snacks (often she’ll cut fruit up) but there isn’t really any other interaction other than her coming through for food, and dad or I helping her regulate and prioritising homework.
L goes to bed pretty early – between 8.30-9.30. If she is anxious or there is a hyperfocus at the time (at the moment it is the US riots – she will stay up for hours after she goes to bed, read articles). We take her evening medication through and she’ll go to bed without fuss. If L is anxious, dad will give her a massage to help her relax. Every night she listens to a particular podcast and she needs it on to get to sleep.
Thank you for reading my submission,
( I would like to remain anonymous please)
5