Acceptance

Jeremy attended a kindergarten birthday party when he was almost 4 years old. I went over to check how he was going and another parent told me that he was impressed because Jeremy had tried to spell out his name (when asked what his name was) because he knew that the parent wouldn’t be able to understand him. Unfortunately, Jeremy couldn’t pronounce many of the individual consonant sounds either, especially the ‘J’ so he was still unable to be understood.

Jeremy had never babbled as a baby and rarely cried like other babies, instead he grunted and grizzled and later pointed. He picked up a few words early on but then stopped using them. When Jeremy was 2 years old, a ‘maternal and child health’ nurse suggested that Jeremy’s difficulty communicating could be responsible for some sleep and behavioural concerns I had about him.

The nurse put me in touch with a  publicly funded speech pathology service in the area, which was much less expensive than private services. I referred to Jeremy’s new speech pathologist (K) as the ‘talking doctor’ to Jeremy and explained that she would help to teach him to speak and Jeremy was very interested and excited about each visit. He also made dramatic improvements after each visit.

I recall generally that K mentioned that I should speak in less complicated language such as “Jeremy up?” instead of “Would you like me to pick you up Jeremy?” I think also Jeremy wanted to learn how to talk and it was almost like he was made aware that he could talk just by having a ‘talking doctor’.

Unfortunately, when Jeremy finally started to use speech he only spoke in vowels because he couldn’t pronounce consonants, which meant it was extremely difficult to understand him and added an extra element to the speech therapy. In addition to his speech diagnosis of expressive language delay with idiosyncratic error processing difficulties, Jeremy received a diagnosis of Autism Spectrum Disorder (autism) at 3 years of age. Given that Jeremy now had a diagnosis of autism he was no longer eligible to see that speech pathologist, so we switched to M.

One by one, M helped Jeremy pronounce each consonant sound. It involved manipulation of the mouth and tongue and practice saying the words alone and in sentences. The words were on worksheets with a picture matching each word. It took a month or more for Jeremy to learn how to say each consonant, until we got to the ‘Ch’ and ‘J’ sounds.

M tried so many strategies to isolate the ‘Ch’ sound but after a years worth of trying Jeremy still couldn’t pronounce it (I think the way he tries to pronounce it is called lateralization). His tongue just refuses to move in the right way to produce the sound. It’s incredibly difficult to learn how to make this sound when it doesn’t come naturally.

Jeremy always found the speech exercises difficult and disliked them as a result of his lack of success with the ‘Ch’ and ‘J’ sounds. I tried many things to try to improve his inclination to practice. I used reward systems, constructed certificates and colourful sheets with words and pictures that would interest him more than the boring ‘black and white’ sheets. I also purchased various speech pathology applications on the iPad (Articulation Station by LittleBeeSpeech was particularly good). Often there would be improvements for a while but eventually the novelty would wear off.

Jeremy would cry from time-to-time when told it was time to practice his sounds and he would complain of being tired and pretend to yawn. He would wriggle and fidget endlessly and avoid eye contact (something he usually didn’t do). He practically climbed all over his chair during the sessions.

M and I praised Jeremy regularly, acknowledged how he felt, explained what we are doing and why and how long it would take. We also gave him fiddle toys (sensory) to squeeze and stretch but Jeremy still had difficulty coping with the sessions. I would have preferred to have a longer appointment but with breaks in between but M only did 30 minute sessions. If you do the math her fee was 3 dollars per minute…tick…tick…tick.

I always sat in on the speech pathology appointments. I found myself willing Jeremy to make the right tongue and lip movements and often copied what M was doing so that I could be familiar with it too. If someone was watching us through our lounge room window, they would probably think we were in training to compete in the mouth movement Olympics, pursing and pouting our lips and curling our tongues in deep concentration.

Jeremy and I were both at our wits’ end with just the mention of the sound ‘Ch’. It had become traumatic for both of us. I got frustrated because I just wanted him to practice, I didn’t care if it wasn’t perfect but Jeremy couldn’t cope with ‘getting it wrong’ and had developed a strong aversion (probably anxiety-related) to ‘sounds practice’.

Jeremy had such success with M in the past with other consonants that I although I had considered it, I didn’t want to change speech pathologists for a long time. I kept thinking “We are nearly there, just one more sound” It was like being near the end of the finish line in a marathon in a bad dream, you can see the finish line but you seem to be running on the spot.

I asked M one day if there were languages that exist where you didn’t have to pronounce the ‘Ch’ sound and would that mean that Jeremy would no longer need speech pathology. She said yes. Damn the English language for needing a ‘Ch’ sound!

I explained our predicament to Jeremy’s paediatrician and she recommended another speech pathologist, so I have put Jeremy on a waiting list for this new therapist. However, Jeremy is 7 years old now and after 5 years of speech therapy I am worn out, Jeremy is worn out and we are glad for the break.

I previously assumed that Jeremy would be able to articulate all sounds accurately with ongoing speech therapy but now I’m not convinced. I had recently asked M if it was realistic to expect that Jeremy would eventually be able to pronounce ‘Ch’ with therapy and she seemed to think he should. M said that “only those with severe apraxia of speech” may always have difficulties pronouncing sounds even with speech therapy.

However, with a little investigation of my own it seemed that even though treatment efficacy of speech disorders has generally been shown to be effective this does not mean that you can expect all children to show improved intelligibility or communication functioning with treatment. In addition, all the articles that I have briefly skimmed through tend to stress ‘improvements’ not ‘gaining speech with no obvious phonological differences to their typically developing peers’. I feel that M raised my hopes a little too high.

I have recently been doing a lot of reading about autism from blogs by disability activists and I have learnt a lot from them. In the case of Jeremy’s speech, I am leaning toward a healthy dose of ‘acceptance’. To really understand what is meant by ‘acceptance’ with regard to autism, I encourage you to read pages 10-13 of the first issue of the ‘Parenting Autistic Children with Love and Acceptance’ magazine.

I brainstormed the pros and cons of speech therapy and wrote them on a piece of paper (roughly, within a short time, as the thoughts came to me) with the intention of discussing it with Jeremy. Jeremy is a very smart boy and I think that exposing him to these concepts is appropriate for his level of understanding (which is high).

However, I didn’t put one of my fears on the list (that I didn’t want to expose him to) and that is the potential for workplace discrimination in the future. My fear is that he may be overlooked for promotion or employment in the future. It happens.

Pros and cons of continued speech therapy for Jeremy

N.B. You’ll notice that I put ‘Discrimination and Bullying’ in the ‘Cons’ column and you may think it doesn’t belong there. I actually put that there subconsciously and later thought there is no way I could justify putting that in the ‘Pros’ column anyway.

I asked Jeremy to “come over and have a look at something important that he has a ‘say in’”. Then, when he was next to me, I pointed to the sheet of paper and said “This is about speech therapy. How do you feel about that?” His bottom lip dropped and my bottom lip dropped in reply and I said “You feel sad” and gave him a hug.

I said “I have written a list of all the reasons supporting speech therapy and all the reasons against speech therapy” and I pointed out that there were more reasons in the ’don’t do’ or ‘Cons’ speech therapy column (to let him know that I could see it was a problem for us). We read through the columns and I asked Jeremy what he thought we should do. He said “I don’t know”. I said “How about we try a new speech pathologist after a long break and if you still feel the same after a few sessions we can stop it? We can also help children who are different including those who speak differently by defending them if they get teased” (refer to earlier post on bullying). Jeremy was satisfied with my suggestion and didn’t seem to want to discuss it any further (he appeared to lose interest).

Jeremy is a privileged child and I need to remind myself of that, if he has an obvious vulnerability or vulnerabilities it can only enhance his empathy for others. One of the greatest gifts autism has given me is the ability to empathise with other people with vulnerabilities (who are likely to be discriminated against). I am less likely to underestimate someone’s competence or what they have to offer me as an equal. I am a true believer that vulnerabilities lead to strengths elsewhere by virtue of the need to cope and our ability to adapt (refer to an earlier post here) and at the very least vulnerabilities do not negate any strengths that a person already has independent of those vulnerabilities.

With the wide range of less obvious characteristics that can be discriminated against (refer here) it is unrealistic to avoid all of them. It is a much more honourable goal to promote acceptance and celebrate diversity than it is to strive for an unrealistic goal of ‘normalizing’ everything, which leads to placing the blame on the person for their differences. Jeremy’s speech is now normal for Jeremy.

I suspect that we won’t be seeing the new speech pathologist for long but it is always worth getting a second opinion. I will definitely be asking for a detailed and completely open opinion about all the likely outcomes of speech therapy for children with a similar profile and history to Jeremy. However, I believe that I already know the answer for Jeremy and I know that I have already accepted, without anxiety, that Jeremy will always have a speech impediment and he will not be alone and it is not a problem. In fact, it is a relief to put an end to what has clearly become a torturous experience for both Jeremy and I.

 

 

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FC and RPM

Ariane Zurcher has given me permission to reblog her post on Facilitated Communication and Rapid Prompting Method. Although both my boys and I can speak I like to promote awareness and acceptance of other peoples experiences with autism and Ariane wrote an exceptional account of methods to assist people who are unable to speak to communicate through the typed word and on the importance of presumption of competence, which follows here:

Emma's Hope Book

Both facilitated communication (FC) and Rapid Prompting Method (RPM) while different in practice, are based in a presumption of competence and both are a bridge to the common goal of independent communication.  It bears repeating – the eventual goal for both is independence.  And yet they are both criticized.  In fact, no matter what the initial method used to learn to type by non-speaking, Autistic people who have gone on to type independently, people like Carly Fleischmann, Tito Mukhopadhyay, Sue Rubin, Jamie Burke, Ido Kedar and so many others, there are those who continue to question the authorship of their words.  Even though no one touches them as they type.  Even though there is no physical contact of any kind as they write.  Even though they all talk about the issues they must contend with on a daily basis, things that are specific to them and the challenges they face with a mind…

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Storytelling

Over and over again, Damian was scripting in a deep booming voice “Fee! Fi! Fo! Fum! I smell the blood of an Englishman!” as the room went silent. His five and six-year-old classmates were getting changed into their swim wear for the school swimming lessons, while Damian was enjoying the acoustics of the change room.

His love of the drama of words/phrases/stories could be genetic and/or environmental. My mother once studied speech and drama for a couple of years in early adulthood and her love of it carried over in her reading of books to us. I inherited mum’s very expressive story telling style and similarly love to read to my children.

When reading bedtime stories to Damian in the evenings, I notice that he watches my face very carefully (something he usually doesn’t do) and I know he is studying me, intent on absorbing everything about the way I read so that he can do it too.

Last school term, Damian received an award at school assembly for captivating his classmates with his storytelling. I was lucky enough to be the classroom helper at the time that he read the story that earned him that award. He used such wonderful expression and then went on to explain the use of sarcasm in the story. Get that! My son who has autism understood sarcasm at five years of age. Myth busted!

Damian and Jeremy are great readers and I love that they choose to pick up books and read them with such concentration, interest and humour; books about monsters, icky stuff, funny stuff and/or facts. I hate having to ask them to stop reading to get ready to get ready for school, it feels ironic. However, this morning was not a school morning and Damian picked up a book and started reading and my heart melted, so I asked him if I could video tape it and he proudly agreed and even volunteered to start the story again. You can listen to it here*.

I hope that Damian doesn’t lose his love of storytelling and drama (even if he does conform and become more selective about when he chooses to express it) because it’s a beautiful thing and I don’t like to see beautiful things wither and fade.

*Really wish I hadn’t of interrupted Damian to correct a word towards the end but no-ones perfect right. We know it as zucchini anyway, not courgette.

 

The Conversation Canopy

When conversation is not intuitively learned you have to learn it word by word and nuance by nuance. With all the permutations and combinations of conversation it can sometimes be overwhelming task.

I will never be able to master conversation like someone with intuitive conversation skills but I will sometimes pass for adequate. As a child, conversation was completely elusive to me. I couldn’t detect the patterns, the flow or what made a conversation. I rarely spoke unless asked a question and after providing the answer there was nothing more to be said.

The only time I came close to entertaining anyone with language was when re-hashing fateful yet amusing tales of unique situations that I found myself in (stories for other times). Obviously, they were monologues and not conversations because I never thought to ask someone about how they felt or about their experiences. It wasn’t that I didn’t care; it was that I didn’t know to ask.

One day, when walking home from school, I stepped in line with two classmates Aaron (his real name) and George (not his real name) or they stepped in line with me more likely. Aaron asked me what I planned to do when I finished school. At the time, I had entertained the idea of naturopathy because I wanted to leave highschool a year earlier yet continue with further study (the naturopathy course allowed that) and I had an interest in health, so I happily imparted the answer to his question.

George then rubbed his hands together and smiled “Doesn’t that include massage? I think I’ll come and visit you then.” Aaron turned quickly to George and told him he shouldn’t have said that.

I completely panicked. It hadn’t occurred to me that I would have to touch people and worse touch people who wanted to be touched in an ‘affectionate’ or even ‘non-platonic’ way. I immediately clammed up, I was literally speechless. The rest of the walk home was completed in silence and I never spoke of naturopathy again.

It didn’t occur to me to ask Aaron what he wanted to do when he finished school. As it happens, Aaron is now a successful film director. I have bought tickets to watch his latest film Canopy tonight. It’s a ‘meet and greet’ session and Aaron will be there. I wonder what I’ll say when I see him (besides how much I loved the film) perhaps I’ll ask him what he wants to do next.

 

 

Raising my children

I started this blog 6 months ago. Over that time the way I write has changed. I decided to look though my earlier blog posts after reading the PACLA magazine on acceptance to see if I wrote anything offensive to people with autism*. Yes, I have autism too but that doesn’t proof me against being ableist and yes, I was writing like I was an authority on autism (cringe) and I used discriminatory rhetoric (cringe).

With regard to two of my earlier posts, I felt they needed a total re-write. So I have deleted my posts on ‘challenging behaviours’ (cringe) and joined them to form one very long one post here instead. This post won’t be perfect but hopefully it will be a bit better and on the topic of perfection neither am I. A day doesnt go by when I don’t do something imperfectly as a parent but it doesn’t stop me trying to be the best I can be in a balanced and conscious way.

What matters most when raising your children is love and acceptance. Acceptance means being able to say and believing that “I love you just the way you are right now”. You will need to understand autism as being a different way of viewing, understanding and interacting with the world, not flawed but different. Autism provides advantages and disadvantages to people in the environment in which they live. We need to maximise the advantages by changing the environment (advocating for acceptance, inclusion and modifications to the way we do things to help support differences) and by helping our children to understand and get the most out of their interactions with other people and their environment. Too much emphasis on the latter will increase their anxiety and feelings of being inadequate so it’s a balancing act. Also what we say to our children and about our children when they can hear and what we expect from them will shape their self image and self worth so we must always try to be wary of that.

Everything in this post is relevant to all children. Unfortunately, I still sound a bit instructive in it sometimes; I can’t seem to shake that completely. However, it is important to me that you understand that I consider myself to always be learning and I just want to share the strategies that helped my young boys communicate and cope better with others and their environment.

What works for my boys may not work for everyone, what is most important when you develop effective strategies that work for you and your children is that you maintain consistency with them. The world is a chaotic place for some of us and consistency helps to reduce that. I don’t mean don’t change anything, especially if it’s not working, but don’t change too much too quickly and gradually expose and explain what you are doing and why to your children. Our children likely understand a lot more than we give them credit for, their social communication challenges mean we don’t always recognise that.

Communication and behaviour   

With a few exceptions, behaviour is communication and although each child with autism is different, the one thing that can be said for children with autism is they/ we have difficulties with social communication. Those difficulties vary greater from child to child, but given that behaviour is usually considered a form of communication then you would expect that their behaviour would show that (sometimes more obviously than others).

Communication difficulties can sometimes be to the extent of not being able to communicate verbally at all. Fortunately, there are communication methods available for children with or without autism that enable them to communicate their needs. My children are not non-verbal but I thought it was important to include information on facilitated and augmented communication so I have copied a link explaining these forms of communication here. Being unable to verbally communicate does not mean that you are unable to think or understand. I really dislike the rhetoric of being ‘developmentally’ at a younger age than what you are. It’s literally not correct and insulting. We do learn as we age even if we can’t communicate that to you. So don’t treat or talk to your teenage child like you would a 5 year old just because they paediatrician says they are ‘developmentally’ at that age because it’s patronising.

My children don’t often experience meltdowns (complete loss of control over their actions due a fully engaged flight or fight response). This may be because our life is very routine, yet we make sure they are stimulated with things that they like to do, with lots of preparation for anything that is out of routine eg. showing pictures of what can be expected when we go somewhere or do something new. It could also just be the nature of how my boys’ autism presents itself though because every person with autism is different. When my boys experience a meltdown my aim is to remove them from the environment (or remove the stressors from them) that is causing them great stress and wait for them to calm down. Unfortunately, there is little you can do to reason with someone during a meltdown except ensure that they are away from danger. Meltdown behaviour cannot be addressed with many of the strategies that I write about in this post. Please refer to the following link for more information about meltdowns here.

The next point that I need to make is that some behaviours that we see in children are a response to sensory overload or under-stimulation rather than a form of communication. Sensory processing difficulties and differences are very common among children with autism1, 2. Studies have shown that there are three to four subtypes of sensory processing domains in children with autism, which represent a combination of differences in auditory filtering (sound), movement sensitivity (vestibular and or proprioceptive), tactile sensitivity (touch), taste/ smell sensitivity and low energy/weak (posture and static body position) characteristics1, 3. Within each of these domains children may be either under sensitive or over sensitive or exhibit both extremes3, 5. In addition those sensory processing differences are shown to be related to communication and behaviour1.

Some behaviours that children may have may concern people when actually the behaviour serves an important purpose of the child. In some cases the behaviour acts as a sensory modulator (rather than a form of communication) for the child and may not necessarily cause harm. Stimming is one such behaviour.

Jeremy fidgets constantly, chews his nails, chews his clothes or flicks his ears or other less common movements. To prevent damage to his clothes I have encouraged him to take fiddle toys and chewy pencil toppers to school. Sometimes the toys etc. help to reduce his chewing of clothes and sometimes they don’t, so I have taken to not purchasing clothes that are easily damaged such as studded jackets (he chews studs of the jackets). Chewing and fidgeting repetitively fits the definition of stimming. Most forms of stimming have a sensory function and can help children to cope with their environment. Stimming is quite common among children with autism and even among children without autism. Refer here for more information on stimming.

‘Maslow’s hierarchy of needs’ as it relates to motivation and reaching one’s full potential suggest that basic needs such as physiological and safety needs have to be met first4. In general, what I like about his theory is the general premise that basic needs have to be me before more specific and complex goals can be achieved. If you have an onslaught of sensory stimuli or are under responsive to sensory stimuli you are hardly going to be in a great position to sit still and actively listen to a teacher. (Aside: Some people with autism may be able to listen better while moving so it is important to determine if the behaviour is due to a sensory disturbance that can be removed or just diversity in how they learn best.) Similarly, if you are very hungry or tired and do not recognize it or are unable to communicate your need for food or sleep you are not going to be in a good position to learn something new or interact effectively with others and that may be a familiar situation for children without autism too. These are examples of basic physiological need that take precedence over other behaviours.

An Occupational Therapist is the health expert to consult about concerns of a sensory nature. In particular, always look for a health professional with expertise in autism and one that comes highly recommended by other families in the autism community.

In general, children with autism have more daily challenges than those without autism, in particular many sensory challenges and difficulties recognizing and then communicating their needs to meet those needs. So then, it is not surprising that behaviour that may seem to be ‘bad’ behaviour by unaware people such as ‘refusal to comply’ or ‘running away’ or ‘not sitting still’ may be more common among children with autism. With this in mind it is important to understand all behaviour properly and not making a quick judgement of the reason for or function of the behaviour.

The use of a behaviour recording chart is usually recommended to observe and analyse any behaviours of concern displayed by children with or without autism. Don’t forget some behaviours don’t even need to be changed they are just differences that don’t do anyone any harm and we should be more accepting of them (refer to this link for an example). Jeremy’s child psychologist first introduced us to the behaviour recording chart and it helped her to understand Jeremy’s behaviour better before providing me with advice. Behaviour recording charts often include sections for writing descriptions of the behaviour including frequency and intensity, what happens before the behaviour, what happens after the behaviour, what factors may have led up to the behaviour or triggered the behaviour. Functional behavioural analysis as it is otherwise known is an important part of addressing behaviours5. You can find out more about how to implement a behaviour recording chart here. Keep in mind we might not always be right with our assumptions even after employing such methods. We have to work with our kids the best we can to figure out what their needs are at any point in time and how best to meet those needs.

It is important to realise that rather than eliminating the behaviour of concern such that only the challenge is left, a replacement behaviour (means of communication) should be taught (and the environment modified if helpful) rather than leaving the child with no means of communicating their needs, coping with their challenges or achieving their goals.

In general, with regard to addressing the needs of our children, we need to make sure that the basic needs of the child with autism are being met such as through use of communication aides, sensory therapies, relaxation techniques, daily schedules and routines and modifications to their environments (for example by modifying or removing sensory stimuli). We may also need to communicate with them in a way that they can better understand by using visual means, by providing extra cues and unambiguous language and by explicitly teaching them how to communicate their needs more effectively to us, for example through social teaching.

The explicit teaching of social skills to children with autism is very helpful and includes the use of such methods as Social StoriesTM, Teaching Interactions8, Video Self-modelling and Cognitive Behaviour Therapy (this can also be very helpful for managing anxiety in children with autism). The premise is to teach children more effective ways for getting their needs met. Social teaching really deserves a post of it’s own so I’d urge you to click on the links for more information. An example of how I have used social teaching to help my boys cope with a novel event can be found here.

Testing the boundaries

There are several general strategies that I use a for addressing behaviours of concern with my boys when the motivation for their behaviour is to ‘test the boundaries’.

  1. Incentives/rewards

It is important to note that we rarely do anything for free unless it is something that we find personally rewarding and we need to believe that what we are doing is making a worthwhile difference.

We believe that we are making a difference when we can perceive the good we are doing and see the follow on effects of our efforts and notice how our lives are enriched by our choices. Children with or without autism may not always be able to see the bigger picture with respect to the good that their actions can have. Children with or without autism may not always be able to easily see the full extent that their actions, words or lack thereof can impact others or make an overall positive outcome for themselves.

Both social and monetary rewards have been shown to be useful for improving task performance6, 7. It has been shown that social reward has less effect in improving task performance than monetary rewards for children with autism compared to a child without autism6, 7. No value judgement needs to be made about this. It is just a difference that should be accounted for (and not a difference that all children with autism have) and provides an even greater argument for utilizing incentives with children with autism rather than relying completely on learning from social feedback. In particular, pairing social teaching with incentives in the form of positive reinforcement of behaviour performance has been shown to be effective for teaching social skills to children with autism.

I find incentives to be a very effective strategy for motivating my boys to display a newly learned skill that I have taught them. The more they practise the skill the easier the skills usually get. The incentive should be something that personally appeals to your child like a lolly or a small toy or time to pursue a special interest. Your child should be aware that they will only receive the incentive if they perform the desired behaviour such as a greeting. The desired behaviour should be achievable and be explained in such a way that your child understands what they need to do properly before facing the situation.

For example, the explanations like these were usually successful for my sons “Damian, if you say ‘hello’ to the kindergarten teacher when we walk into the room and look at her eyes when you say it, I will give you a blue jellybean. Remember you will only get the jellybean if you have said ‘hello’ and looked at her eyes at the same time” (I know some kids find making eye contact difficult or even painful but Damian can do it without discomfort -I’ve asked him- he just needs to be reminded, so the request is reasonable for Damian).

It is important that you stick to the agreement; so that you give them the incentive as close as possible to after they have demonstrated the behaviour and that you do not give them the incentive if they do not perform the behaviour to make sure that the strategy is effective in the future.

My children are usually highly motivated to display a desired behaviour when offered a food treat like a doughnut or chocolate. Obviously, I do not use this strategy every day, given that this treats are not very nutritious. I have completed a Masters of Nutrition and Dietetics many years ago and my children have a generally well-balanced diet so the occasional treat is of no concern to us. Although, I must admit it was a little embarrassing (and a little amusing), when I offered a promised lollypop to my boys in front of a disapproving dental nurse, after they behaved exceptionally well at their first dentist visit (after watching YouTube videos of dentist visits and creating their own personalised dentist social story).

Where possible I gradually phase out incentives when a desirable behaviour has become part of their everyday repertoire. For example, after a few weeks, I was able to stop offering the lolly to greet his kindergarten teacher and just use praise and finally I was able to phase out even the praise. So after a while I reserved the praise for times when Damian voluntarily and spontaneously says ‘hello’ to his school mates and eventually praise wasn’t required at all. Greeting people is a skill that matters to a lot of people (most people feel happier when their presence is acknowledged) and was teachable for Damian.

  1. Token Reward Systems

I have found the token reward chart to be highly effective for encouraging behaviours and tasks that the boys do not enjoy but need to do regularly, like homework. My boys don’t have a lot of homework and it is achievable for them after having some down time after school. Homework may be an unnecessary burden for some children and it may be worth discussing (lobbying for) reducing it or eliminating it with your child’s teacher.

Token systems, such as token reward charts, are often referred to generally as “Token Economy’9. Token economy is considered to be a very effective form of encouraging specific behaviours in children generally but appears to have reduced in popularity due to changing social trends and the introduction of new approaches to teaching behaviours for children with autism9. Preliminary evidence suggests that token economies are effective for changing behaviours in children with autism9,10.

Token Economy has been given more attention in recent times with regard to children with autism, with the realisation that involving special interests as tokens and rewards may have much greater value for learning tasks and behaviour change than traditional or social rewards and tokens for children with autism10,11,12,13.

My token reward system involves placing tokens earned for displaying specific desirable behaviours on a board until a prize is earned. My boys receive ‘small prizes’ at specific intervals (after receiving 6 tokens) until their chart is full (4 lines of 6 tokens). When their chart is full they receive a ‘big prize’. They can choose from a variety of prizes although they usually pick the same things. Damian prefers lollies for a small prize and action figure of recent interest for the big prize. Jeremy prefers time (30 min) playing games on the iPad for his small prize and an iPad game app of his choice for his big prize (plus 30 min playing time). It’s important to get the ratio of number of tokens to prizes right to maximise your child’s motivation.

I use images from the internet that appeal to my boys such as dinosaurs and superheroes to use as tokens. I print off smaller versions of these pictures (right token size), laminate them and apply velcro so that they can be used as tokens instead of stars, smiley faces or other generic tokens which have less appeal for my boys. As a three-year old, Jeremy once insisted on throwing away the ‘smiley face’ tiles in a board game, in preference for playing with the number tiles only and Damian often refuses generic stickers offered by therapists as a reward for behaviour if they do not interest him.

My children get a pre-determined number of tokens for activities that they have reduced motivation to complete (as well as using other strategies such as social teaching where relevant and praise). Such activities include:

  • School readers
  • Other school homework
  • Speech therapy
  • Vision Therapy
  • Leaving the school playground after school when asked and without complaining excessively
  • Following two or three basic rules for when on play dates
  • Practicing skills that they find challenging such as bike riding

Finally, when using token economies it is usually recommended that you do not remove tokens as a punishment because they were hard-earned. It is best to use another unrelated system for applying negative consequences.

A Facebook friend recently shared a post on a parenting style that is popular among some parents. It involved avoiding applying any “unnatural” consequences, claiming that unnatural consequences are not only unnecessary but damaging to the child and the parent -child relationship. ‘Natural’ consequences were allowed, such as pointing out how your child make another child unhappy as a result of his/her actions. The idea is that you child would then alter their behaviour in the future as a result of taught empathy. I consider this an extreme parenting style and I do not recommend it. You may recall that I suggested that some children may not respond as well to only social feedback so you can see how it may not work effectively alone with those children.

In general, parenting needs to be a flexible process, all children are different, all situations are different and I don’t believe that anything is ‘unnatural’ (anything that happens is natural) much less providing consequences besides just social feedback and explanations.

I’m all for teaching my children how their behaviour affects others and I do, but at this stage in their lives I know it’s not going to be enough for them to give up a toy they really like that they snatched off another child (for example).

In the event of a ‘snatched toy’ in a public situation, I am more likely to apply strategies such as distraction (to a better toy or game) and/or apply the concept of ‘taking turns’ (using my phone alarm to indicate 5 minute turns) and I insist that they first give the ‘snatched toy’ back. This is in addition to explaining that they have made the child upset and it is not a friendly thing to do. If these methods have not been successful, I will apply a consequence such as saying firmly “If you don’t give that toy back within the count of three you will not be allowed to play the iPad today”. On top of that I also make sure they hand it over nicely, if they throw it, I’ll get them to pick it back up and pass it to the other child “nicely”. I did however have a problem on my hands the day a child bought a golden coloured ‘Thomas the Tank Engine’ toy train to PlayConnect playgroup when ‘Thomas the Tank Engine’ was a special interest and the colour gold was a favourite colour of my boys. I had to ask the mum to hide it and fortunately she understood.

There is another less popular form of consequence that I apply sometimes with my boys….

  1. Time Out

Time Out involves the child having to leave a room or activity as a consequence for specific behaviours. Time Out also offers an opportunity for the child and the parent to calm down if upset.

I use Time Out to manage situations where my children have intentionally physically hurt one another or have refused to follow repeated routine requests (that I know they are capable of carrying out at that time) that are examples of testing the boundaries i.e. they would just prefer to do something else. In the case of physically hurting each other, they get sent straight to their room immediately with no warning. However, for all other behaviours I give a warning that the next repeat of that behaviour will result in them being sent to their room or alternatively “If you do not do as I ask in the ‘count of three’ then you will be sent to your room for Time Out!” These warnings give them the opportunity to reconsider their actions. The ‘count of three’ warning when followed through with properly works very well with my boys. My boys are more likely to physically hurt each other when they are under greater stress generally, for example, when travelling to visit people during holiday periods. It is important at those times to give them as much advance notice of new events, places or people that they will encounter (preferably with photos or videos – visual means) and plenty of time to themselves to relax each day doing things they enjoy. Activities suitable for my boys to relax include reading books, playing with Lego, playing the iPad or playing a simple card or board game with an adult (preferably because kids tend to argue about the game).

Jeremy and Damian have a timer in their room that I set to the allotted time, which is almost always the number of minutes that equals their age in years. For example, 6 minutes for a 6 year old. The time does not start until they are quiet. If they start repeatedly yelling at me during Time Out then I start the timer again. After they have been quiet for the allotted time, I do find that their anger (and mine) has subsided and they are willing to do as I have asked.

What do you do if they refuse to go to their room for time out or leave their room during time out? I found an effective and simple method manage this. I simply say “If you do not go to your room in the ‘count of three’ then I will add one minute to your time out” If they have not gone to their room, after the count down, I confirm the new time and say “If you do not go to your room in the count of three then I will add another minute to your time out” and so on. This works without fail for me (the longest time I ever had to allocate was 20 minutes once). If it doesn’t for you then you can also consider taking away a privilege of some sort. I don’t recommend physical force to get them to participate in Time Out or keep them in the room during Time Out because it usually just makes them a lot angrier and encourages aggression.

When Time Out has been completed, the idea is to go about the days usual activities as if nothing has happened. I received most of my Time Out strategies from a very helpful child psychologist and she made it clear to me that she did not think it was necessary for Jeremy to apologize after Time Out because having to say ‘sorry’ may escalate the behaviour more. This works well for us. Click here for more information on Time Out.

Alternative behaviours to those that resulted in them being sent to their room, can be taught and encouraged separately to Time Out. It is best to teach behaviours in a positive way when your child is in a good mood using strategies like Social StoriesTM or role play rather than immediately after Time Out when your child may still be vulnerable to getting upset.

Recently, when attending a workshop for parents on managing challenging behaviour in children with autism, one of the parents asked the facilitator “When do we instruct our child to say sorry?” The facilitator replied “Our model is a ‘no discipline’ model”. The room was mostly silent in response to that, most of us probably thinking that doesn’t fit with our current parenting styles. The facilitator effectively implied that it was not recommended to punish our children ever. Broadly speaking, punishment refers to applying negative consequence for the behaviour.

Punishment can involve taking away something that the person wants or likes and  even includes something as benign as not receiving the usual reward or token when an activity is not performed as requested. Punishment also includes instances where something undesirable is given in response to the behaviour, such as being given an extra household chore to complete. Time Out also acts as a form of punishment in that the child may be removed from activities or attention that they enjoy.

Punishment is increasingly becoming taboo in our society and yet many of us actually do punish our children sometimes for displaying behaviour that we do not like, in addition to using non-punishment strategies. Some researchers suggest that functional analysis of behaviour, followed by altering reinforcements of the behaviour and substitution with replacement behaviour eliminates the need for punishment14.

However, according to an article by Vollmer (2002), regardless of changing social expectations and the availability of non-punishment options for managing challenging behaviour, punishment still happens, either unplanned or planned, whether socially mediated or not socially mediated14. Vollmer argues that to ignore what seems to be an inherent process of human evolution or existence is not perfect logic but how punishment can be applied to maximise the effectiveness of interventions within an ethical framework is yet to be fully appreciated and requires more research14.

In particular, there is greater pressure from health professionals not to punish your child when they have a diagnosis characterised by communication or sensory challenges15 because their behaviour is more often related to communication difficulties or sensory processing and they may be punished for behaviours outside of their control at the time. That is why I wouldn’t apply Time Out to an autistic meltdown.

Unfortunately, researchers are failing to recognise when comparing the use of punishment between children with or without autism, is that behaviours in children without autism may also have the same function in a child with autism such as a communication challenge (remember from my first blog that the traits of autism are distributed in a continuous gradient across the whole population). In addition, a child with autism is not defined completely by autism and their behaviour may have similar functions to those children without autism on occasions also such as ‘testing the boundaries’ or ‘seeing what they can get away with’, so why wouldn’t we use punishment for those circumstances where the motivation for the behaviour is the same.

The fact of the matter is that non-abusive punishment has been shown to be effective for changing behaviour and is especially useful when the participation in the behaviour itself is reinforcing for the child to continue with it such that it cannot be controlled satisfactorily in the short or long term15. Of course, I primarily use other non-punishment strategies for my boys as my preferred methods for encouraging behaviour that communicates their needs better (referred to earlier such as social teaching and modifying their environments to be more supportive) but I still think non-abusive punishment has a role in raising children to be respectful of boundaries.

  1. Positive to negative ratio of interactions and praise

I propose a theory on punishment frequency (and I am not referring to abusive punishments here but to punishments such as Time Out and withholding of rewards) whereby non-punishment strategies with positive reinforcement (praise and incentives) versus punishment should ideally reflect a ratio of 5:1 (or more) in application, approximating the ratio of praise/compliments to criticism for ideal performance/relationships that has been shown for working and romantic relationships 16, 17.

You don’t have to follow the ratio exactly; it’s just a theory very loosely based on only two articles that I read. The general idea is to have an overall heavy positive influence in our children’s lives.

Children with autism or communication difficulties or sensory processing difficulties often get so much criticism sometimes that it is likely to have negative effects on their self-esteem and relationships with significant others unless countered with even more praise for the things they do well.

I often find when my children and I are getting grumpy that a few hugs, a few games that they enjoy, a few compliments can set us on a course to a brighter day.

Click here for more information on the general benefits of praise and how to make your praise more effective.

One thing is for sure, researchers have not determined the ‘right’ way to raise a child yet and all children are different. It is unlikely that our children will be severely psychologically damaged by loving parents who use primarily non-punishment strategies (such as teaching and positive reinforcement) but sometimes also use consistent non-abusive punishments (such as Time Out and withholding of rewards) that act as fair and reasonable consequences for specific behaviours that are based on ‘testing the boundaries’. Keep in mind that a behaviour record chart can help identify the cause or function for/of the behaviour, and may reveal important triggers for the behaviour, which can also be avoided or minimized in the future.

Note: It is possible that these strategies may not be suitable for children with severe intellectual disability. Parents should use their knowledge of their child, to decide if their child is able to understand the concept of these strategies and benefit from them.

*’with or without autism’ is not the way many autistic people choose to identify. I use ‘person first’ and ‘identity first’ terminology interchangeably in my posts depending on the context (because as an autistic person I am comfortable with both- refer here for my thoughts). For this post, I chose person-first terminology because I expect the likely readers will be new to understanding autism and have falsely learned that to be called ‘autistic’ is some kind of insult (in fact it is insulting in itself by being considered an insult) and I don’t want to deter them from reading this. Autistic advocates generally avoid posts like these because they are usually ableist and therefore painful to read.

References:

  1. Lane, A.E. Young, R.L. Baker, A.E.Z. Angley, M.T. Sensory processing subtypes in autism: Association with adaptive behavior. Journal of Autism and Developmental Disorders 2010; 40:112-122
  2. Ben-Sasson, A. Hen, L. Fluss, R. Cermak, S.A. Engel-Yeger, B. Gal, E. A meta-analysis of   sensory modulation symptoms in individuals with autism spectrum disorders. Journal of Autism and Developmental Disorders 2009; 39: 1-11
  3. Lane, A.E. Dennis, S.J. Geraghty, M.E. Brief report: Further evidence of sensory subtypes in autism. Journal of Autism and Developmental Disorders 2011; 41:826-831
  4. Koltko-Rivera, Mark. E. Rediscovering the later version of Maslow’s heirarchy of needs: Self-transcendence and opportunities for theory, research, and unification. Review of General Psychology 2006; 10(4): 302-317
  5. Myers, S.M and Plauche Johnson, C. Management of children with autism spectrum disorders. Pediatrics 2007; 120: 1162-1182
  6. Delmonte, S. Balsters, J. H. McGrath, J. Fitzgerald, J. Brennan, S. Fagan, A.J. Gallagher, L. Social and monetary reward processing in autism spectrum disorders. Molecular Autism 2012; 3(7): 1-13
  7. Lin, A. Rangel, A. Adolphs, R. Impaired learning of social compared to monetary rewards in autism. Frontiers in Neuroscience 2012; 6: 1-7
  8. Leaf, J.B. Oppenheim-Leaf, M.L. Call, N.A. Sheldon, J.B. Sherman, J.A. Taubman, M. McEachin, J. Leaf, R. Comparing the teaching interaction procedure to social stories for people with autism. Journal of Applied Behavioral Analysis 2012; 45(2):281-98
  9. Matson, J. L and Boisjoli, J. A. The token economy for children with intellectual disability and/or autism: A review. Research in Developmental Disabilities 2009; 30:240-248
  10. Charlop-Christy, M.H. and Haymes, L.K. Using objects of obsession as token reinforcers for children with autism. Journal of Autism and Developmental Disorders 1998; 28(3):189-198
  11. Charlop-Christy, M.H and Haymes, L.K. Using obsessions as reinforcers with and without mild reductive procedures to decrease inappropriate behaviors of children with autism. Journal of Autism and Developmental Disorders 1996; 26(5):527-546
  12. Boyd, B.A. Conroy, M.A. Mancil, G.R. Nakao, T. Alter, P.J. Effects of circumscribed interests on the social behaviors of children with autism spectrum disorders. Journal of Autism and     Developmental Disorders 2007; 37:1550-1561
  13. Koegel, R. Kim, S. Koegel, L. Schwartzman, B. Improving socialization for high school students with ASD by using their preferred interests. Journal of Autism and Developmental Disorders 2013; 43(9):2121-2134
  14. Vollmer, T.R. 2002. Punishment happens: Some comments on Lerman and Vorndran’s review. Journal of Applied Behavioral Analysis 2002; 35(4):469-473
  15. Lerman, D.C. and Vorndran, C.M. 2002. On the status of knowledge for using punishment: Implications for treating behaviour disorders. Journal of Applied Behavior Analysis 2002; 35(4): 431-464
  16. Gottman, J. M. (1994). What predicts divorce: The relationship between marital processes and marital outcomes. New York: Lawrence Erlbaum.
  17. Losada, M. & Heaphy, E. The role of positivity and connectivity in the performance of business teams: A nonlinear dynamics model. American Behavioral Scientist 2004; 47(6):740–765.

Shame and the ‘unwanted identity’

A Facebook friend posted a youtube video that I found valuable so I shared it with my Facebook friends. Then several friends immediately responded telling me who was responsible for the video (Dr Brene Brown) and how fabulous her work on shame was. I replied saying that I would look into her work and I watched her TED talk, found it interesting and then completely forgot about it. In fact, I can’t remember which TED talk it was. It could be either this one or this one. Take your pick, they are both worth a listen.

Several months later, I was talking to one of those friends and she told me that Dr Brene Browns book ‘I thought it was just me (but it isn’t): Making the journey from “what will people think?” to “I am enough”’ changed her life. I asked her to send me the details of the book, which I purchased and read. I have quoted heavily from this book in this post.

I usually only read autobiographies or books about autism but to my credit (patting myself on the back as I write) I recognized how important this book was to my friend and I read it as an effort to foster connection with her (even though she wanted me to read it for me).

By page 74, I sat back in shock realizing that this book would be incredibly valuable for me on many levels but especially as a woman with autism.

On page 74, it read: ‘Researchers Tamara Ferguson, Heidi Eyre and Michael Ashbaker argue that “unwanted identity” is the quintessential elicitor of shame. They explain that unwanted identities are characteristics that undermine our vision of our “ideal” selves. Sometimes we perceive others as assigning these unwanted identities to us, and other times, we pin them on ourselves.’

Now, before you misinterpret what I just wrote. I want autism as part of my identity, I am proud of who I am, how I think and with my achievements and I attribute a lot of that to many of my autistic traits. However, according to Brown “shame is something we have little control over feeling because it relies on the perceptions of us by others.” It is “how we see ourselves through other people’s eyes”… “how others see me”… “what others think”.

I have mentioned before how the rhetoric of Autism Speaks is harmful to people with autism (here) and Brown’s body of research validates that. Well, I recently commented on another organization’s Facebook post about the rhetoric they used and I was so shaken by ensuing discussion that I came away never wanting to promote awareness like that again. I felt as though I was a ‘bad person’ for commenting and I was a ‘lone voice in the wilderness’.

This is what I wrote:

Are you aware of the potential impact of rhetoric such as “terrible affliction”? I know you mean well but please check out this link for more info www.autismacceptancemonth.com/about/ thankyou

It was a little naïve of me to write something so vague and expect an empathetic response. Naturally, the author of the comment came back with a stream of defensive comments that floored me and I realize now the feelings that I felt although complex included a heavy dose of shame.

The author wrote:

I am one of the admins for this page and I would like to respond to your comment. My own family has been touched by autism quite dramatically and I feel that you need to take this into consideration in my following statement.

“Affliction” by Oxford Dictionary definition means “A cause of pain or harm”. If you have read any of the other posts on our site, you would be aware that at no time do we intentionally speak negatively with regards to any form of disability, Autism or otherwise. I have numerous friends the world over, who are touched by that situation in their lives. I don’t believe it puts a negative connotation on the message, nor do they, given the amount of sharing and POSITIVE response.

Is it also not a “terrible” thing, by dictionary definition yet again? What reasonable, cognitive person would think anything other than that? Whilst people may want to sugar coat things as the way the world now works, nobody can dispute the terribleness of those who are challenged on a daily, mostly hourly basis.

Please understand that I know where you may be coming from, however, it does not alter the message I wished to put out to the world, as one of love and admiration for all the struggles those “afflicted” with Autism must face on a day-to-day basis. I would never intentionally place that out there in the world.

I trust you will not look negatively on our organisation from this post, as we do believe we are doing good work in our community to highlight some of the more “hushed” aspects. While others want to sweep these things under the carpet, we wish to provide a neon sign (preferably Blue) to point the way to a better tomorrow.

He also responded to someone else’s compliment on his organizations work as follows:

I personally think the only impact that was not positive was someone drawing attention to 2 small words, which are appropriately used, to describe such horrible circumstances people deal with every day of the week. Most of us take for granted the little things, like having their children say they love them for example. Some autistic children don’t ever manage to find those words to say to their parents, simply because those thoughts and feelings get too muddled. So to highlight those words alone kind of makes the entire message of love, hope and support get lost. With 2 autistic children I take my hat off to you. YOU keep up the good work mate.

I then realized that I needed to clarify so I wrote:

I’m certain you do good work and I am grateful for it. However, I still think my point was valid and I will continue to advocate for people with autism (myself and my children included) which includes a more respectful rhetoric. My boys and I are among many people with autism who do not feel ‘terribly afflicted’ but I do feel terribly misrepresented.

Of course, the discussion went on for a bit longer but his beliefs were clear when he said ‘we must agree to disagree’. I was concise and he was verbose. His perception of people with autism and their families remained “terribly afflicted”.

I have written before about the conflicting viewpoints of different people on autism and its emotional effects on me (here and here), which I urge you to read to get a better understanding of where I am coming from. I now understand that the feeling that ‘shakes me to the core’ and makes me feel faint and nauseous when discussing these issues is shame. I can’t change the way that the author of the post and his organization thinks about me and my children, which is of being ‘terribly afflicted’.

I do not exist without autism, neither do my boys. The way my brain thinks is who I am and autism is the way my brain thinks. Please read more about my thoughts and feelings about this here.

Brown’s book touches on the potential consequences of shame such as mental health issues and addiction. However, Browns focus of the book is on relationships and she cites the major consequence of shame is that it leads to fear, blame and disconnection.

It is not just people with autism who are susceptible to shame Brown writes that “Shame is universal. To varying degrees, we all know the struggle to feel comfortable with who we are in a society that puts so much importance on being perfect and fitting in. We also know the painful wave of emotion that washes over us when we feel judged or ridiculed about the way we look, our work, our parenting, how we spend our money, our families or even the life experiences over which we had no control. And it’s not always someone else putting us down or judging us; the most painful shaming experiences are often self-inflicted.”

Most of Brown’s research is on women and she lists the impossible society- cultural expectations of women as follows:

  • Don’t make people feel uncomfortable, but be honest.
  • Don’t sound self-righteous, but sound confident.
  • Don’t upset anyone or hurt anyone’s feelings, but say what’s on your mind.
  • Don’t be offensive, but be straightforward.
  • Sound informed and educated, but not like a know-it-all.
  • Sound committed, but not too reactionary.
  • Don’t say anything unpopular or controversial, but have the courage to disagree with the crowd.
  • Don’t seem too passionate, but don’t come off as too dispassionate.
  • Don’t get too emotional, but don’t be too detached.
  • You don’t have to quote facts and figures, but don’t be wrong.

This is a ‘double whammy’ for autistic women whose vulnerabilities lie in the very area women are expected to be experts in: ‘social communication’. The shame that we may have imposed on us by others reduces our chances of further connecting with others.

This paragraph from Brown’s book summarizes it quite well “Shame begets shame. When we sacrifice authenticity in an effort to manage how we are being perceived by others, we often get caught in a dangerous and debilitating cycle: Shame, or the fear of being shamed, moves us away from our authentic selves. We tell people what they want to hear, or we don’t speak out when we should. In turn, we feel shame for being dishonest, misrepresenting our beliefs or not taking an important stand.”

So what can we do about this? Brown’s research concludes that although we cannot become resistant to shame we can build shame resilience.

We can build shame resilience by recognizing our shame triggers (be it parenthood, body image, paid work or many other number of things), practicing critical awareness (“understanding the connection between our private lives and social, political and economic influences”), reaching out (“we don’t reach out to “fix” or “save” others. We reach out to help others by reinforcing their connection network and our own”) and speaking shame (“to be able to identify and communicate what we are feeling and why we are feeling it” with regard to shame).

Brown reassures us that all these skills can be learned and provides guidance by sharing stories of other women who have learned and developed shame resilience. She believes that we can create change in our lives and encourages us to do the same; Brown writes:

“Believing that we truly do have the ability to create change in our lives may seem difficult, or even impossible, at first, but it is one of the most empowering steps along the path to developing resilience. When we talk about individual and collective change, it’s important to realize that not all of us are going to engage in political action, advocacy or even small group efforts. Some of us may create change by changing the way we interact with people or changing our relationships. Others may raise critical awareness with friends and family members.”

Brown refers to some of the ways we can create change by referring to the 6 Ps:

“Personal: …Change can take many forms- there is nothing more inherently political than breaking through social-community expectations so we can live our lives at our full potential and help others do the same”

“Pens: Write a letter…petition”

“Polls: Vote. Find out how candidates feel about the issues that affect your life and vote”

“Participation: Learn about the organizations that support your issues. Join them in the fight.”

“Purchases: The dollar is mightier than the sword; stop buying from people who don’t share your values.”

“Protests: A protest is not always a million people marching on the capital. Sometimes a protest is four or five people showing up at a school board meeting or in someone’s office. Regardless of size and scope, when we come together to ask for what we need some people will label our actions as “protest”. If that stops us, we have to ask, “Who benefits by that?”

In conclusion, I quote Brown “if we can find the courage to talk about shame and the compassion to listen, we can change the way we live, love, parent, work and build relationships”. I think this is a valuable thing to aim for; not perfection just connection.

Brown’s book resonated with me and it will resonate with many other people from all different walks of life. There is much more to this book than just what I have written here and it is a book that I feel comfortable recommending to women with autism (and men and women generally) to help enhance connections with others and cope with the stereotypes and ‘unwanted identities’ they face due to ignorance surrounding autism and what it means to be a woman.

References:

Brown, B. I thought it was just me: Making the journey from “What will people think?” to “I am enough” New York, Gotham Books, 2007

Support groups and stereotypes

Recently, I was approached by a facilitator of a support group that I attended a few years ago to write an endorsement of the group in a similar way that I write my blog posts. I decided to post it here because it might be of some interest to other parents of children with disabilities:

My experience with support groups is limited out of personal choice. Over time, I have become aware of many different types of support groups through organizations and health professionals. However, because of my challenges with socializing with my peers, I find many support groups more stressful than supportive for me.

I sort and received a diagnosis of autism for myself when my two sons were young before they were also diagnosed with autism. With the knowledge that there is a strong genetic component to autism, it is not unusual for parents of children with autism to have social communication difficulties themselves

Fortunately, there is one kind of support group that I found very valuable and rewarding to attend. That type of support group is the kind of group where the focus is on the children. When the focus is on the children, I can chose to play with the children, help set up or pack up activities and be social with other parents in the amount that suits me best for each.

PlayConnect Playgroup and MyTime were two such child-focused groups. These groups were free to attend and were specifically funded for children with additional challenges or disabilities. A facilitator (and/or play helper) was employed for each group to set up the activities for the children, facilitate discussions about respite information, agency supports and services and to organise guest speakers to present more specific information to the parents.

Although, my children were not always interested in playing with their peers they loved to play with me, in fact they expected it and demanded it. My boys were what you might typically refer to as ‘clingy’. I was my boys’ best playmates in the groups, although there were some lovely interactions with other children from time-to-time.

The children in the groups often freely moved around each other, while they were encouraged to interact with each other they certainly were not forced too and were given space to explore the activities, toys and equipment set up inside the room and outdoors. I was grateful for the opportunity for my boys to spend time with other children with disabilities and get to know them. It is the best antidote to prejudice.

Although, there was very little judgement or prejudice among the children, my boys were very protective of their food. Like me, my boys have enormous appetites and were often the first to sit down for snack and the last to leave. While eating their snacks, they would put their arms around their plates and lean over their food to prevent other children from taking their food and if they suspected that someone was about to try they would yank their plates away from the child and closer to their chests. In fact, it’s the only time they didn’t spill their food.

I was fond of all the children’s idiosyncrasies, including my own boys’ quirks. But it wasn’t just about quirks. In the PlayConnect Playgroup, there was one child who nearly always smiled a beautiful beaming smile, which never failed to make me smile. There was one child who never smiled at playgroup and often became overwhelmed and upset especially indoors. I felt sad for him when he wailed, which indicated his distress, as did my boys who became agitated and a few times even cried along with him/ for him. However, when that boy climbed back and forth over the rocks that lined the garden it made me feel calm and reminded me of how much I used to love climbing rocks as a child.

In the PlayConnect Playgroup there were boys* like my boys who would bluntly and honestly say what they were thinking, boys who were passive and quiet and boys who were active and loud. There were boys who were clumsy and boys who were athletic, boys that liked trains and boys that liked animals. Actually most of them liked both trains and animals but care must be taken not to slip into a stereotype. I wasn’t exposed to toy trains as a child, so I don’t know if I would have liked them or not but if I had of known about the stereotype of children with autism being ‘obsessed’ with trains (and if I had of known I also had autism) I would have rejected them outright. I don’t like to be boxed in a category**, it’s the reason I rejected the colour pink.

There was as much difference between the children in the PlayConnect Playgroup as there is for those children without autism if not more but they all shared difficulties in social communication (those difficulties varied), some had obvious sensory challenges (which also varied from touch to sound to proprioception) and some had obvious ‘restricted interests and repetitive behaviours’ (once again, those interests and behaviours varied). These additional challenges made typical playgroups stressful environments for some children.

Like most playgroups that I had attended with my children there was a routine of sorts. However, the PlayConnect Playgroup, which was specifically for children with a diagnosis of autism or symptoms of autism it was even more structured and included visual schedules and cues. My children and I find routine and visual prompts helpful as do many children with autism so the group really was tailored to our needs.

Being a lover of routine, we were always reliable attendees to the groups. We rarely skipped a week. The number of children attending the PlayConnect Playgroup at any one time were limited to provide a smaller less intimidating group than other playgroups, which also enable us to receive plenty of one-on-one attention from the facilitator.

What I most appreciated about these playgroups was that the parents tended to have a greater understanding and acceptance of the different needs and behaviours of children with disabilities so I felt more connection with the parents than I would in non-specific playgroups. In non-specific playgroups, I felt more exposed and vulnerable to judgement.

It just so happened that the facilitators and play helpers for both groups also had children with autism themselves, which helped enhance our connection and their connection to our children.

PlayConnect Playgroup and MyTime played a wonderful role in our lives when my boys were young. The groups were fun and educational on many levels (through play) for my children and they helped to support me with knowledge, resources and connections.

I hope that groups like these can continue to be funded to support families like mine because they really helped us to fulfill our unique needs and develop connections with other members of the community where non-specific groups had been less successful.

*Nearly all of the children with autism who attended the PlayConnect Playgroup were boys so my generalised observations of the children in the group can only be extended to boys. There is much discussion about whether girls are under diagnosed in the population. A study byDworzynski et.al. (2012) showed that girls were less likely to meet diagnostic criteria for autism even with the same levels of autistic traits. Subtle differences in symptoms have been observed in the scientific literature (Hartley 2009) with girls experiencing greater deficits in communication, while boys have more stereotyped and repetitive behaviours and interests. Girls may also experience more sleep problems and affective problems than boys with autism (Hartley 2009). These differences led the researchers of this study to suggest a need for more sex-specific diagnostic and intervention strategies (Hartley 2009).

**I do not consider my diagnosis to be a ‘boxed in category’ (refer to my previous post on my personal thoughts on diagnosis).

References:

Dworzynski, K. Ronald, A. Bolton, P. Happe, F. How different are girls and boys above and below the diagnostic threshold for autism spectrum disorders? Journal of the American Academy of Child and Adolescent Psychiatry 2012; 51(8):788-797

Hartley, S & Sikora, D. Sex differences in autism spectrum disorder: An examination of developmental functioning, autistic symptoms and coexisting behaviour problems in toddlers. Journal of Autism and Developmental Disorders 2009; 39(12):1715-1722