Talking to kids in the classroom about Autism

I had an awesome day today. My son Damian has been very anxious attending school recently for a number of reasons, which we are seeking appropriate help for. It occurred to me that it might help him to feel more understood by his classmates if I had a chat to them during class about Autism, diversity, difference and disability.

Initially, Damian was concerned that I would be telling the class all about him. He is very conscious (and rightly so) about people talking about his vulnerabilities. So I asked Damian if I could talk about my Autism (I am Autistic) and Autism generally and then mention him briefly at the end. He was much more keen on that idea. I let Damian read what I was going to talk about and he was very happy for the talk to go ahead. I will paste the talk below (and the kids’ answers and questions in brackets – at least the ones I can remember).

When the day of the talk finally came, Damian was as excited as I was to be talking about my favourite topic, only his reason for being excited was because I was his mum (he is only 7 years old; his classmates are 8 years old) and I was going to be talking about how being different was cool.

After the talk finished, Damian told me he loved it. He had sat wide-eyed at my feet and completely focused for the entire talk and this is a boy who was also recently diagnosed with ADHD. When I asked if he thought the other kids had liked the talk too he said that they might have been more interested in the toys and books* that I shared around.

I think the talk was well-received by both the teacher and the kids in the classroom. There was lots of interest in what I had to say and I was very interested in what they had to say too. There were some great discussions. The kids of tomorrow are going to rock this world!

Good morning everyone,

Some of you may already know me but for those of you who don’t, I am Damian’s mum. I have come to visit you today to talk to you about being different especially one type of difference called Autism. Can you say the word ‘Autism’ with me? Saying it out loud will help you remember it. Try it now. 1, 2, 3, “Autism”.

Before I start talking to you about difference, I am going to hand around some books about being different and you can flip through the pages quietly while I am talking and look at the pictures. I will leave the books in the classroom for the week, if you want to read the books but for now I just want you to look at the pictures and share the books around to others in your class.

A word some people use to mean difference is ‘diversity’. Can you say it with me? 1, 2, 3, “Diversity”. What does that word mean again? Can anyone tell me? (No-one could guess except Damian who said “Black people who aren’t treated well by white people!” I said that skin colour was one example of diversity and gave a few more examples. Some of the books I had shared around had themes of racism in them.)

Diversity, which means being different, makes the world a better place. Imagine if everyone was exactly like you, looked like you, liked the same things as you, wanted to borrow the same library books as you and brought the same things to ‘show and tell’ every week. Imagine how boring and even frustrating it would be.

In this world, there are lots of different people working and playing in different ways to make things more interesting, fun and better for all of us. We are pretty lucky that there are so many different, interesting and exciting people and things for us to do in the world.

You will notice in some of those books that some differences are differences that we can see. Some of the people in those books wear glasses like me, some have guide dogs, some use wheelchairs to get around, some people have brown skin and some people have white skin, some people are young and some people are old, some people live in different houses and some people wear different clothes.

But some differences cannot be seen. Can anyone guess what difference I might have that you cannot see? (One child guessed different blood-type, which I told him was a great guess because you can’t see blood- type. Another few children guessed other things that could be seen. Finally, I let my son answer because he already knew the answer.) That’s right, I am Autistic.

Even though I am different because I am Autistic, I am also a lot like you and I was even more like you when I was younger. I used to like playing with friends, swimming in our own swimming pool, climbing trees, riding bikes and reading books. Sometimes I was happy like on my birthday and when I played with my younger cousins and sometimes I was sad like when other kids teased me or I fell over.

In fact, everyone in this room has some things the same as each one of us and other things that are different.

But because I am Autistic, I am even more different to you in some ways. Kids and adults who are Autistic may sometimes do or say things that are a lot different to most other people their age because our brains work differently sometimes. Soon I am going to read you a book that will explain how our brains work and think differently.

Some things about Autism are really great and those things are different for each Autistic person. I like that Autism helps me to say and spell lots of really big words like ‘Autism’ and ‘Diversity’. Autism also helped me to be great at maths at school, whereas other Autistic kids found maths hard but found that Autism helped them with art or music or writing or certain sports.

People with Autism can sometimes be just as different to each other as you are from each other but there are some things we have in common and this is explained in this book ‘Inside Asperger’s Looking Out’.

‘Asperger’s’ is just another word people used to mean Autism. People don’t use the word ‘Asperger’s’ much anymore so I am just going to use the word ‘Autism’ instead of ‘Asperger’s’, wherever it is written in the book.

While I read the book to you, I’d like you to put your books upside down on your lap or on the floor and pass around these squishy toys to squeeze and stretch gently while I read. Kids and adults who are Autistic often use toys like these to help keep them calm when things are getting difficult for them because sometimes it can be hard being different. Many other people find the squishy toys relaxing too.

(I read the book but skipped a few pages because it’s very long. I asked the kids about what the ‘senses’ were before reading the pages about how our senses can be different and one very smart girl answered the question better than I could. I also paused on other pages to clarify.)

Does anyone have any questions about the book? (A couple of great questions were asked like “How do you know if you have Autism?” and “Where does Autism come from?” Of course, I answered relating it to my own experience.)

You know, I am not the only one in this room that is Autistic. Autism is something that you are born with that is passed down from your parents or grandparents or other relatives. So Damian, who is my son, is also Autistic. You might notice that sometimes he finds things easy that you don’t and sometimes he finds things harder than you. It is important for anyone who is different to be understood and treated well especially when they are finding things hard.

Our school classrooms and playgrounds can sometimes be difficult for kids who are different because they are not made in ways that suit them best. They often have too much noise for us, too many bright lights or too much movement and this can stress us out. It is called ‘disability’ when our classrooms, where we work and live and the rest of the world is not built to support our different abilities.

Can you say the word ‘disability’ with me? 1, 2, 3 “Disability”. Our buildings and the way we do things is built for most people but not all of us and we need people to make our schools and lives easier by changing things to make it easier for all of us. It’s only fair.

Can you think of ways we could change the classroom or the playground to make things better for kids with disabilities like Autism or any other disabilities that you can think of, so that it is better for all of us? (There were some great answers to this question. Some about not teasing or bullying kids who are different and some about having quiet areas that kids can go to.)

Now you can understand why some people and kids look or act differently and you can just be cool about it. It’s cool, it’s Ok to be different and we need different people in our lives and in the world and we need to remember that even though Autistic kids can be different they are also kids just like you who want to play, learn and be treated well.

(Then the classroom teacher asked the class if they found squeezing the squishy toys helpful for listening. Many of the kids did. The teacher said that he finds that if he draws patterns while listening he finds it helpful to listen and learn and he asked the children if anything helped them to learn better. A couple of kids answered.)

*These were books that I bought for my boys to read at home to increase the diversity of their bookshelves. I have reviewed many of them in previous blog posts here and here.

Anxiety: avoid or enable?

Damians artwork

Previously , there was a personal story about my son here. I did not think to ask his consent to publish it at the time because he was five years old. It was about his anxiety with regard to the school cross country event and how we worked together to manage that anxiety successfully. I read the story to Damian today and he asked me to delete it but he wanted me to leave the picture of his artwork up here. I have retained the information on anxiety generally.

Autism and anxiety

Children with autism experience more anxiety than other children1;2;3. The rate of anxiety among children with autism increases with increasing IQ and functional communication3. The cause of the higher rates of anxiety is not fully understood but is likely to be multi-factorial.

My opinion is that the increased anxiety experienced by children with autism is due to a combination of increased social and sensory challenges and stigma. In addition, from my experience, I believe that expectations of self and others to behave ‘normally’ contribute to increased anxiety among people with autism especially those whose differences are less visible.

To help to manage the anxiety experienced by people with autism, cognitive behavioural therapy (CBT) is recommended for trial by scientists1;2. CBT is an evidence-based practise for reducing anxiety in general populations4;5 and recent evidence indicates that it also useful for reducing anxiety among children with autism1;6.

Lang et al. summarizes CBT very succinctly as ‘a) The patient is told the origin of their anxiety symptoms to help them realize that feeling anxious is not their fault. b) The therapist works with the client to help them realize the impact of anxiety and the need for change. c) A ranking of situations or stimuli from least to most anxiety producing is created. d) Clients are gradually exposed to the least producing anxiety situations/stimuli first while simultaneously learning to control their fear. e) The client is taught a variety of coping behaviours (eg. relaxation techniques) to help them manage their anxiety’6 .

Lang et al. recommends that CBT procedures for children with autism who do not have an intellectual disability be modified by ‘reducing the emphasis on abstract discussions of thoughts and feelings and by increasing the emphasis on the graduated exposure and teaching social skills as a coping mechanism. Additionally, rewards are given to improve compliance during treatment, visual aids are used as instructional tools, and the clients’ families are encouraged to participate. For individuals who also have an intellectual disability, graduated exposure and/or functional assessment followed by a function-based intervention is recommended’6 .

Two excellent books that I have found useful for helping to manage my boys’ anxieties that work on these principles are ‘Managing Anxiety in People with Autism’ by Anne Chalfant and ‘The Panicosaurus’ by Al-Ghani.

No-one can answer the question ‘avoid or enable?’ posed earlier, as a general rule. Many factors need to be taken into consideration in each case of anxiety for each child with advice from experts and those who know the child well. However, it is worth being aware that CBT, which discourages avoidance (with the understanding that avoidance may increase anxiety) may be useful for your child. A child psychologist with expertise in autism can give further advice on any unique situations that your child may face.

References:

1. Reaven, J and Hepburn, S. The parent’s role in the treatment of anxiety symptoms In children with high-functioning autism spectrum disorders. Mental Health Aspects of Developmental Disabilities 2006; 9(3): 1-7

2. White, S.W. Oswald, D. Ollendick, T. Scahill, L. Anxiety in children and adolescents with autism spectrum disorders. Clinical Psychology Review 2009; 29(3):216-229

3. Sukhodolsky, D.G. Scahill, L. Gadow, K.D. Arnold, E.L. Aman, M.G. McDougle, C.J. McCracken, J.T. Tierney, E. Williams White, S. Lecavalier, L. Vitiello, B. Parent-rated anxiety symptoms in children with pervasive developmental disorders: Frequency and association with core autism symptoms and cognitive functioning. Journal of Abnormal Child Psychology 2008; 36:117-128

4. Compton, S.N. March, J.S. Brent, D. Albano, A.M. 5th. Weersing, R. Curry, J. Cognitive-behavioral psychotherapy for anxiety and depressive disorders in children and adolescents: An evidence-based medicine review. Journal of the American Academy of Child and Adolescent Psychiatry 2004; 43(8):930-59

5. Velting, O.N. Setzer, N.J. Albano, A.M. Update on and advances in assessment of cognitive behavioural treatment of anxiety disorders in children and adolescents. Professional Psychology: Research and Practice 2004; 35:42-54

6. Lang, R. Mahoney, R. El Zein, F. Delaune, E. Amidon, M. Evidence to practice: Treatment of anxiety in individuals with autism spectrum disorders. Neuropsychiatric Disease and Treatment 2011; 7:27-30

My stay in a psychiatric hospital

Now before you think I am confiding a deep dark secret, it is nothing of the sort. To this day, I find myself occasionally mentioning my stay in a psychiatric hospital to a friend or even acquaintance during casual conversation, usually with no warning. Why would I do that? I’m not quite sure. Maybe I find it amusing, maybe I like to shock or maybe I like to challenge preconceived beliefs about psychiatric facilities and the people who attend them. All I know is that I am definitely not ashamed or embarrassed.

My sister recommended the mother-baby unit of the private psychiatric hospital to me because she had a friend with post natal depression who found it very helpful. My family noticed that my anxiety levels were excessively high even for me.

I was able to look after all my baby (Damian) and toddler’s (Jeremy’s) needs. I fed and entertained them. I washed and dried them, their clothes and their cloth nappies but my husband did everything else in the house including feeding me and I was so sleep deprived that I cried about it. I was so anxious that I avoided leaving the house at all for the first few months after my baby was born.

It’s possible the turning point was when one of my sisters saw how hairy my legs were when she came to visit, I remember her look of horror but it only made me want to laugh. However, I recognised that it was about time I tried something different to manage my lifelong difficulties with anxiety and I saw the potential for more sleep with only Damian to take care of in hospital.

I had begged the hospital staff over the phone to admit me as soon as possible, making sure to communicate the extent of my inability to cope and sobbing loudly into the receiver. I distinctly remember a nurse asking me “Do you have any concerns about your baby’s health?” I didn’t and I answered as much but I assumed that it must have been a key question to decide if we needed psychiatric care. That was my first clue about the prejudice that many of us inpatients would be faced with.

The ward looked like any other hospital ward with a nurse’s station near the entrance and patient rooms down the sides of a long corridor interspersed with a communal kitchenette, a lounge room and a couple of small meeting rooms. When I entered the ward for the first time, I remember feeling concerned that one of the psychiatric patients from the other levels of the hospital could easily walk into the rooms and take my baby. Unfortunately, I had been unduly influenced by the media portrayals of people with mental illness, which are not very well-balanced. It makes for better ratings when the media appeals to our worst fears.

Not long afterwards, I was also feeling a little wary when I noticed my unwell-looking room neighbour mumbling to herself angrily as she entered her room but later I realised that she was talking on her mobile and had a bad case of the flu. Now I can say with certainty that she was the loveliest and most trustworthy person I have ever met.

We had a weekly schedule to follow, group meetings/ counselling sessions with the nurses and consultants and meetings with our individual psychiatrists. My psychiatrist prescribed me a low dose of a common anxiety medication and for the first time in my life I felt a blissful calm feeling.

I attended my first group meeting dressed in tracksuit pants and slippers and to my embarrassment I noticed that all the other mothers were well dressed. I didn’t make that mistake again. It seems that even though we were unwell enough to be in hospital we still had to keep up appearances, which was an annoyance to me. No wonder I hadn’t wanted to leave the house. I had very little room for extra effort.

During my first break (when Damian was fast asleep), I ventured into the empty communal lounge and took out my bright red ukulele and some sheet music that I had printed off the internet. I brought it with me intending to learn how to use it while Damian slept. I took a few strums and realised that it was going to be more difficult than I thought to learn an instrument. I also decided that it was probably an abnormal thing to do anyway (even in a psychiatric hospital or especially in a psychiatric hospital, I’m not sure which), so I didn’t bother picking it up again after that. Instead I just read the women’s magazines lying around the place but it was still a luxury.

One of the nurses tried to analyse me after I had divulged half my life story and failed dismally by interrupting and trying to complete my sentences with incorrect assumptions. She was the nurse everyone loved because she was so confident and funny, but she never took to me. It seemed that even in a psychiatric ward I was going to be the most different and least popular person. My interpretations of picture cards and discussions during group sessions often differed to the majority view as well. I didn’t know at that time that I was autistic.

One thing I did well was entertain my baby; I had plenty of practice entertaining my first-born because Jeremy was only ever content as a baby when I entertained him with songs, books, dancing, games and new experiences. It was nice to be given compliments about my interactions with my baby. At least I seemed to be doing something right, even though it was different yet again.

I had trouble sleeping in the ward because of the constant noise, my toilet leaked constantly, the cot rattled, babies cried and to top it all off it was Occupational Health and Safety protocol for the nursing staff to come into your room and shine a torch in your face every two hours at night-time. I protested and complained about the process but none of the other patients seemed to care and the nursing staff just nodded and shook their heads about me behind closed doors. Don’t they know that uninterrupted sleep is important for good mental health?

I started talking about wanting to leave because I was getting less sleep than I had at home, I even resorted to sleeping pills, and my mum and husband weren’t coping very well with Jeremy’s behaviour and sleep patterns. It was then that I found out that I wasn’t allowed to leave until the psychiatrist determined my mental health to be much improved. But what happens when the hospital is bad for your mental health? That was a shock, after all I had entered voluntarily and I didn’t have any suicidal thoughts. Where were my rights? I wasn’t even allowed to go for a walk outside without the psychiatrist signing off with an acceptable date and time, if it was acceptable at all. Didn’t they know that exercise is good for mental health?

The nurses always thought they knew best with regard to our babies. One day, towards the end of my stay, they tried to verbally bully us into waking our babies up one day to go to a supervised outing at the coffee shop across the road but one of the mum’s was more assertive (once they got her medication right) and she told them in no uncertain terms that she was not going to disturb her baby’s sleep for it. Although I wouldn’t have been brave enough to defy their instructions alone, with her beside me there was safety in numbers and so I also refused to wake my baby up to attend. I felt empowered but I’m sure they recorded our non-compliance in our medical histories.

One of the nurses had dared to say to a couple of us that she didn’t believe in reflux and that she believed that it was just a sign of anxiety in the mothers. I told her in a firm voice that was not true and that Gastro-oesophageal Reflux Disease (GORD) was a medically accepted diagnosis, one which my toddler had until he was 18 months of age (facts are something I feel more comfortable asserting myself with). The nurses would try to counsel us out of our concerns about our babies but I believe to this day that the mothers with concerns about their baby’s health were probably very perceptive and would later find those concerns to be validated. Both my sons were later diagnosed with autism.

Ironically, an insignificant event worked in my favour for early release. I had always insisted on carrying a baby monitor around with me so that I could attend to Damian when he woke from his naps. The nursing staff didn’t like baby monitors because they believed it was a sign of excessive anxiety and they said that they would let me know when he woke. But my babies never screamed like the other babies did, they grunted. Their vocalisations were different (autism-related). I knew that they wouldn’t hear Damian when he awoke and that he would be very distressed by the time they attended to him. It was the day I forgot to take my baby monitor to my psychiatrist appointment that the psychiatrist was satisfied enough to say that I was ready to be discharged (because I had forgotten the baby monitor) and sure enough when I got back to the ward there were no nurses at the station and my baby was screaming, no doubt having been awake for a long time unattended.

I did find several things about my stay to be valuable for my mental health, even though I wish I had of learned them through a different process (online preferably):

  • The right medication for anxiety and depression can be really helpful. Other patients’ experiences also showed me that the wrong medication can make things a lot worse
  • Having time alone without children, such as 30 minutes a day can be very beneficial
  • Accepting that even with treatment you will experience anxiety from time to time (and not being afraid of it) was also helpful for me
  • Cloth nappies are not for everyone
  • and last but not least, there should be no place for ignorance in healthcare institutions.

Mental health helpline contact details follow:

Australia: www.aifs.gov.au/cfca/pubs/factsheets/a143428/index.html

US: www.get.gg/helplinesUS.htm

UK: www.get.gg/helplines.htm