As I held my breath…

I read a version of the serenity prayer this week written by an autism mum (facebook.com/MommyBuddy). It said: ‘God grant me the serenity to accept that the world doesn’t understand autism-The courage to take my child out in public anyway-And the wisdom to know when it’s time to go home.’

The ‘time to go home’ bit made me laugh…because it is so true. I do think that the world is getting better at the understanding part, and having courage can pay off. Like yesterday when I went to the park with my son. He requested to go. When we arrived he saw children playing over at the obstacle course on the other side of the park and he ran over there. He worked his way through the course, needing help from me every now and then to tackle the big equipment. When he finished the course I suggested to him that we go over to the other part of the park that had a big playground. There were no children over there. He looked at the small group of children playing together (there were no other parents around) on the obstacle course and said to me “please have the boys and girls come over there (and pointed to the playground). I said to him ‘Sure – you go and ask them.’ So we walked over to the oldest girl in the group who looked about 11 or 12 years old. I said to the girl “my son wants to ask you ask question if that’s ok.” She had a couple of younger friends sitting near her. My son turned to her and said “please… you come…you go…this way…go over there… the playground…with me”

My son’s body was not quite facing the girl front on, his speech was clear but a bit laboured, and the sentence structure was…well… wonky tonk (that’s the official word for it)…but he had tried his guts out to ask the girl and her friends to come over to the other playground with him. Every word that came out of his mouth was said with maximum concentration to try and communicate what he was wanting. I looked calm on the outside, but my chest was pounding. This was huge. HUGE! In times like this all the years of work and effort and intervention come together. My mind is flooded with the memory of all those countless little developmental building blocks that have been put in place over the years to bring about this moment. I stepped back a little and held my breath…there are no therapists around, no one scaffolding interactions, no one making accommodations, no one thinking about autism…just my kiddo out in the big wide world…initiating a social interaction. The scariest part is that the outcome is totally out of my hands. It rests in the hands of a young girl and her friends who just happened to be playing in the park late on a Sunday afternoon.

The girl as calm as anything says to my son “sure thing-just give me a minute and we will be right over”. My son promptly sat down in the sand to wait for her until she and her friends were ready.

I am not sure if the girl didn’t notice any differences, if she didn’t care or if she was too polite to say. It didn’t matter to me-I stood there next to my son and smiled. AMAZING!! It would mean nothing to so many other mothers but to me it meant everything. When other people respond like that girl did-I feel so filled with hope. Every day regular people out in the community can do so much and make such a difference. Children can help without even realising it and without doing that much at all. The girl in the park didn’t say NO to playing with my son, she didn’t ask why he talks a bit different, she didn’t ask why his body language was not quite right, she just said YES! She was warm and friendly and was just a nice person.

I don’t always know how the next person I meet is going to react…and whether or not they are going to be as natural and as inclusive as that young girl in the park. This day was a good day! My son got to experience one of the greatest and simplest pleasures in all of life. Playing with some kids you meet at the park late one sunny afternoon and staying until the sun goes down and its way past dinner time, because you have buddies to hang with and you can play chasey and hide and seek and push each other on the swing. It doesn’t get any sweeter than that. Pure bliss for my son. Indescribable joy for me . Just had to share it.

No More Talking Mum!

In my previous blog “The Way We Roll” I wrote the following: “For my son pictures are more easily processed than the spoken word. He just ‘gets’ it when I show him a picture or use visuals to schedule out the plan for his day (like a visual diary). The pictures seem to just ‘stick’ in his mind easier than words. He continues to improve in his ability to understand, retain and follow verbal instructions…but visual supports are his number 1. They also help him to calm down if he is upset about something, and are far more effective than me or someone else telling him to calm down.”

A fellow blogger kindly asked if I could explain more about this, in particular the highlighted part…here goes…

What I have found both in the literature about autism and from my own experience with my son is that external systems, structures and routines that are represented in a visual way can greatly assist him in providing order and structure to his internal world. Often my son and I sit down together and ‘draw’ out the events of the day. This has the ‘flow on’ effect of helping my child to remain calm and emotionally regulated. Visual systems can take many forms and serve many purposes. The visuals themselves can be photos, drawings, cartoons, icons, words, numbers and actual objects. Temple Grandin is just one example of an adult with autism who explains her visual way of thinking in her book “Thinking in Pictures”. She writes the following:

I think in pictures. Words are like a second language to me. I translate both spoken and written words into full-color movies, complete with sound, which run like a VCR tape in my head. When somebody speaks to me, his words are instantly translated into pictures. Language-based thinkers often find this phenomenon difficult to understand, but in my job as an equipment designer for the livestock industry, visual thinking is a tremendous advantage…I value my ability to think visually, and I would never want to lose it. One of the most profound mysteries of autism has been the remarkable ability of most autistic people to excel at visual spatial skills while performing so poorly at verbal skills. When I was a child and a teenager, I thought everybody thought in pictures. I had no idea that my thought processes were different. In fact, I did not realize the full extent of the differences until very recently. At meetings and at work I started asking other people detailed questions about how they accessed information from their memories. From their answers I learned that my visualization skills far exceeded those of most other people.”

I am absolutely one of the language based thinker Temple writes about. I do not excel at the visual spatial skills she referred to. My son however is brilliant at directions, is amazing at doing puzzles and unbelievable at computer games. His verbal skills do not come as naturally. If I was to ask him how old he is there is often a long pause and maybe a 60 to 80% chance that he will answer: “I am 4 years old”. We have been practising answering this question for months now. He definitely knows he is 4 years old. He absolutely has the ability to say those 5 words in a sentence. It just requires effort for him to access that language from his mind and then to connect it to his mouth and speak it out. It is part of the mystery of autism. My son is a bright boy, but he struggles tremendously with his verbal (expressive and receptive) skills. This is a big deal given that we live in such a verbal world. It can also lead to frustration when you have thoughts, needs and ideas that you are having trouble communicating.

When I say I use visuals to help calm my child I have a sense that I am ‘speaking his language’. When I refrain from using verbal language I am avoiding placing any extra demands on my son. Processing language when he is upset is placing extra demands on an already stressed body and mind. More recently my child has even said to me on the odd occasion ‘No more talking Mum!’ It makes me giggle when he says this but I am quick to oblige. So when I want to help him calm I draw a quick sequence of pictures on a ‘megasketcher’ or ‘magnadoodle’ as they are sometimes called. I put this in front of my son and wait quietly next to him. I do not talk. Soon or later he has a look and when he does I just point to each picture in the sequence. Sometimes he might say what the picture is, sometimes I might say (quietly) what it is, and sometimes I just silently point to each box.

The scenario could go like this: My child is upset because Daddy is going to be late home from work. The sequence of pictures are telling him that he will have a bath, then we will eat dinner, then he will go bed, and after he has gone to bed Daddy will come home. My son gets all that from some (badly drawn!) pictures. He is able to easily process that visual information and calm himself. I may also offer him a quick cuddle and then we carry on. Not every time, but most of the time it helps. I see it as being similar to my need for a diary. Some days I don’t need it but other days I need to know what’s going on either to help carry me through a difficult day (crossing off each item as I go) or just because I can’t seem remember what I am meant to be doing at what time.

My son’s visual way of thinking is different to how I think, but it’s not been too difficult for me to understand and make accommodations for him. All I need to do sometimes is to just stop talking, keep a pen and paper handy, or even have a ‘megasketcher’ nearby!

The Way We Roll

It was after the autism diagnosis and about six months into the early intervention journey with my son that some techniques learned in ‘autism parent training’ stopped becoming ‘therapy’ and just started to become ‘normal life’.  Some strategies have come and gone, but the ones below work so well for both of us that I still use them three years on. These days it’s just the ‘way we roll’ and doing things this way feels as natural to me as breathing.

  1. Offering choices. Lots and Lots of Choices. It is a tool to encourage my son to communicate and to help him form his own ideas and opinions.  It also helps with setting boundaries, and means I can save a flat-out ‘NO!’ for the really important stuff (like safety).  For example when my son communicates to me that he wants to eat some ice-cream and I really don’t want him to be eating ice-cream, I say: ‘you can have an apple or you can have a sandwich.’ That’s the two choices and ice cream is not one of the choices.  Sure there might be a protest (or two…) but he gets my drift! I also offer choices to help him feel empowered. As accessing verbal language can be an effort for my child I want to help him find other ways that he can feel like he has the ability to control him environment.  So I might say: ‘Would you like to have your milk in the green cup or the pink cup this morning’. It doesn’t really matter which one he chooses, but by giving him lots of opportunities like this he is able to express himself in a positive way.
  2. Giving Transition Cues.  I give my chid a cue to let him know when it’s time to transition from one activity to another.  It could be leaving the playground to go home, or playing a new game, or coming to sit down for lunch.  It is even more useful to use transition cues when I’m requiring my child to move from a highly preferred activity to a less preferred activity.  A cue can be verbal (‘two more minutes then it’s time to go’), visual (a clock, a picture, or a photo), a sound (bell ringing, singing the ‘Clean up’ song) or even flicking the lights off and then on again to give a warning that something is about to change. I have found all children seem to appreciate a transition cue.
  3. Being involved.  Getting down on the floor with my child.  This was challenging in the early days for me when my child was 18 months to 2 years old.  I got right down to eye level with him (not just bending over him), and got fully engaged with whatever he was doing.  I tried not to think about all the jobs that needed to be done, I stayed away from TV and social media and I just focused on being in the moment and being engaged.  These days it can be a game, a toy or an activity, but joining in with whatever my child is doing, supporting his ideas and expanding on them has done our relationship the world of good.  Even 5 minutes can be bonding!
  4. Awareness of prompting.  This for me means being aware of how much I intervene to do something for my child that he could do with less help from me. Prompting can include physical prompts, verbal prompts, gestural prompts, and visual prompts. Even waiting with ‘that’ look on my face can be a prompt.  For example as my child was (and is) learning to get dressed it could take a while and the temptation was to do it for him.  As much as possible I try not to physically do it for him but just refer him back to the visual (picture) schedule taped to the wall, so that he could try and do it (more) by himself.  It’s about letting my child do what he can for himself, by himself.  I try to be conscious of scaling back the amount of physical and verbal prompts that he might need to complete the task, without him getting too frustrated.  Plus waiting for him to ask (initially he used a sign before he could say the word) for my help before I jump in has been a big lesson. Every bit of independence my son has is a gift.
  5.  Mixing It Up.  An autism diagnosis can come with rigid thinking or repetitive patterns of doing things.  I have tried to address this by keeping the ‘headline’ routines as steady as possible so he feels secure, but I try to vary up the details.  For example I drive different ways home with my child, I walk to the park different ways with him, I mix up the games we play, I cut the food different ways, sometimes I even move the furniture…whatever I can think of really.  The days I know he will struggle to cope with change I go easy, but other days when he is travelling well I throw in the changes to help him deal ( a bit better) with the inevitable changes in routine that happen in every-day life.
  6. Visual, Visuals, Visuals.  For my son pictures are more easily processed than the spoken word.  He just ‘gets’ it when I show him a picture or use visuals to schedule out the plan for his day (like a visual diary).  The pictures seem to just ‘stick’ in his mind easier than words.  He continues to improve in his ability to understand, retain and follow verbal instructions…but visual supports are his number 1.  They also help him to calm down if he is upset about something, and are far more effective than me or someone else telling him to calm down.

On top of this, lots of tickles, games of chasey, big cuddles and having fun never go out of fashion for my son!  None of these strategies come with a guarantee but they are pretty great most of the time. Three years after diagnosis they have become my ‘new normal’.  Feel free to share your favourite child rearing strategies with me, or try some of mine and let me know how they go!

An MRI scan can get ‘messy’.

I started writing this blog two days ago about my son’s MRI scans…then I read ‘Autism and Oughtism’s’ blog www.autismandoughtisms.wordpress.com entitled “Neurotypical: for want of a better word”, which then led me to ‘The Tumultuous Truth’ http://sharon-theawfultruth.blogspot.co.nz/ – so I figured it was about time to finish and post this!

In 2010 I completed an internship at the Compass Family Center www.compassfamilycenter.org in San Diego, USA. This Center provided low cost counseling, family guidance and educational advocacy for families with children with special needs. It is a wonderful agency doing great work. The internship was part of my Masters degree from Curtin University. As part of the assessment for the internship I had to write a reflection paper for my supervisor on a weekly basis as well as a mid-term and final paper. Here is a bit from one of my weekly reflection papers (from 2010) which I found this week when I was looking through my files.

This week (June 1, 2010) the ‘San Diego Union-Tribune’, a local newspaper of San Diego, published a front page article pointing to a research study being done at the University of California San Diego (UCSD) on identifying biological markers for the detection of autism. This article was significant for me personally as my son is part of the study, but also of interest in terms of the impact this could potentially have from a counseling and therapeutic perspective on the clients at Compass Family Center. The research study involves conducting a MRI scan on young children (under the age of three) who have been either diagnosed or identified as ‘at risk’ of autism. As part of this study a child who has an older sibling with autism is also deemed to be ‘at risk’, due to the increased incidence of a family with one child with autism having another child with autism. The MRI scan involves waiting for the child to fall asleep naturally, which differs from other scans where the child is medicated to fall asleep. During the scan certain recorded sounds are played like a person talking, the sound of an aeroplane, children playing and other sounds to see what activity can be detected in the brain.

The preliminary results of the study show that the left temporal cortex, the social-communication part of the brain, shows little to no activity when noises of a person talking are played while they are sleeping. However, when the sounds of an aeroplane, cars or other mechanical type noises are played the right temporal cortex does show a lot of activity. The researchers stated in the article that the hope was that children could have a scan soon after they were born to identify whether or not they may ‘at risk’ of developing autism.

I go on in the reflection paper to explore the questions raised for me from the study about earlier diagnosis, about earlier intervention, meeting and then no longer meeting diagnostic criteria and about the plasticity of the brain. I talk about the possible effects from a counselling perspective of having biological markers for autism, informing a family their child is ‘at risk’ sometime soon after birth, MRI scans on babies and other issues.

What I want to say now relates to my son’s part in this research study. At the time of the first scan my son was 20 months old and had already been diagnosed. The researcher and I sat in a dark room in an industrial complex in La Jolla San Diego late at night whist my son slept on the MRI ‘bed’ in a room behind a glass window directly in front of us. My son had another scan at 2 years and 7 months, and then a final scan in February this year. My son was aged 4 years and 3 months old for the final scan. This time the researcher showed me my son’s brain images from the first scan at 20 months as compared to the current scan. She pointed out on the computer that the ‘autism overgrowth’ (her words) from the first scan was so significantly reduced in my son’s current MRI scan that his brain now more closely resembled that of a typically developing child than that of a child with autism.

I looked closely at the pictures of my son’s brain sitting side by side on the computer screen and it felt all a bit surreal. I was later given a hard copy of the scans to take back to my home in Australia. So this is where things get tricky. My son is absolutely hands-down a person with autism. Sure, he has changed and progressed from the child who was diagnosed at 18 months of age. Yes, there has been early intervention, but I can assure you the diagnosis of autism is stable. Being told by a very clever researcher that my son’s brain more closely resembled that of a ‘neurotypical’ child than that of a child with autism, was…well…something.

So to answer the question in the title of ‘The Tumultuous Truth’ blog: ‘Neurotypical? Who Exactly? Well it would seem that it’s my child with autism.

Apparently you can be a child with autism with an ‘autism brain’ and then later on have a (more) ‘typical brain’ but still be a child with autism. The researcher also mentioned to me that in the study they were seeing that the female brain with autism was ‘looking’ different from the male brain with autism, and more work needed to be done in this area. As Dr Andrew Whitehouse wrote in his article published this week http://theconversation.edu.au/abcs-four-corners-and-the-messy-truth-of-autism-9050 ‘Autism is a messy truth’. Well said. That’s what I can conclude about the results of those MRI scans.

So to jump back to the two blogs I mentioned at the start…In terms of ‘categorizing’ in one big group all those who do not have autism, that can be a messy too. Which brings me to the use (and my use) of the term ‘neurotypical’ to describe people who do not have autism. I have, upon recent reflection, used the word neurotypical at times to feel part of a community who do understand that our children are different, not ‘abnormal’, and also to try and educate people that my child is not ‘less than’, or even ‘more interesting than’, your child. That’s partly what I am trying to achieve by using this word that is an over generalization, and not really accurate. Unless I check all of the non-autism people in for a MRI scan and then can interpret the results, who really knows what their brain ‘looks’ like or if it is ‘typical’ or not. Plus with brains having the ability to ‘change’ how they look, maybe things have a long way to go before a person’s neurology can be categorized accurately.

At the end of the day ‘the general public’ are not actually obliged to know about or be interested in autism and its related terminology, but I want them to know and I need them (to try) to understand the differences. My big hope is that greater knowledge and understanding will translate into greater acceptance and real empathy. That’s because my child with autism faces some tremendous challenges in this world and people in general can make things better for him.