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.

The Santa Threat

Every year, during the last week of school, I sit my boys down with pen and paper for them to sign Christmas cards for each of their classmates. ‘Card giving’ seems like a thoughtful friendly thing to do so I consider it a good social learning experience for them to sign and hand out cards to all the kids in their class.

I am secretly relieved that not everyone chooses to take part in the voluntary tradition or I would feel the need to confiscate half their haul of candy canes and other treats for the sake of their teeth. In fact, many of the sweet treats that come with the cards do find their way into the nearest bin when my boys have forgotten about them.

Jeremy (my seven year old son) got to work signing cards immediately. He made a list of his classmates and ticked them off as he went. Jeremy loves lists, so he was in his element.

Damian (my five year old son) had a shorter attention span and had only signed three cards by the time he got up and started playing again. I asked Damian why he had only signed three cards and he replied that he only wanted to give Christmas cards to the kids he thought were not (ever) bad in class. This sounded familiar to me, it sounded like the ‘Santa threat’.

Many parents, who give presents to their children from Santa, have used the Santa threat at some time or another. It goes something like this “Santa won’t bring you any presents if you are naughty”. Ingenious isn’t it. Originally, the idea came from the proverb that you would only get a ‘lump of coal’ for Christmas if you were naughty during the year and this was then cemented into Western culture with the hit song ‘Santa Claus is Coming to Town’

‘Santa Claus is Coming to Town’ is an American Christmas song, first performed in 1934. It is a pretty catchy tune with some wonderfully useful lyrics that include:

‘He sees you when you’re sleeping

He knows when you’re awake

He knows if you’ve been bad or good

So be good for goodness sake’

I have used the Santa threat myself in the past, in a desperate attempt to encourage my children to go to sleep at a reasonable hour on the night before Christmas. I have also heard the threat being used regularly in public and private spaces alike during the month of December each year and I smiled in collusion with the parents using it.

Damian had justified cutting short his card signing activity by adapting the ‘Santa threat’ to suit his own means. Nice try Damian. My response to Damian was to explain to him that the ‘card giving’ was about him, showing how friendly and thoughtful he was and not about the person who you give the card too. It was about making other people happy and think well of you rather than representing what you think of their general behavior.

That made me wonder whether the ‘Santa threat’ had somehow maligned the good character of Santa, given that his generosity was supposedly conditional.

There are several flaws to the use of the ‘Santa threat’ that I can see at first notice:

  1. It may be sending the wrong messages to our children i.e. that more socially competent children are more deserving of our kindness
  2. It is unlikely to be followed through with i.e. an empty threat and therefore once discovered as such will be rendered useless
  3. It is a missed opportunity for other equally effective yet more positive behavior management strategies (refer here).

Given my latest epiphany, let’s see how long I last before pulling the old ‘Santa threat’ out of my box of tricks. Although, now that Jeremy takes melatonin before bed to help him sleep, I may not use it after all.

To all the muddled mums and dads out there

It was Monday morning and we were ‘running late for school’. My two boys were usually very good at getting ready for school because I had established a simple effective routine for them. Unfortunately, as is often the case, it was me that was responsible for us having to rush out the door.

As usual, I had tried to fit as much as possible into my morning before driving my boys to school. This morning I thought I would have enough time to load and start the dishwasher and the washing machine, before we left. These are jobs that could be done later but if they are done before I get home it is psychologically easier for me to organize my day. There is nothing less motivating than coming home to dishes and dirty clothes piled up everywhere.

Yes, I know I could have done all those chores the night before but frankly after my boys have gone to bed, I prefer to allow myself to ‘veg out’ on the couch and watch TV (pre-recorded so that I can watch a show that I like, when I am ready too and I can fast forward through the advertisements). It’s good for my mental health to have some ‘me time’ at the end of the day and that is what works for me.

I had an appointment for our new second-hand car’s roadworthy check (required for change-over of registration) for immediately after the ‘school drop off’, so I had to use that car to drive the kids to school. After rushing out the door, I quickly transferred the boy’s car booster seats and safety harnesses from our old car to the new one, something I should have done earlier. A rogue strap hanging from one of the boosters got stuck in the door and I carelessly yanked it out in a hurry, miraculously without breaking anything.

Jeremy attached his own safety harness while I packed the school bags in the car boot. I love that my boys are becoming more independent. I wasn’t sure if he would do it himself but I’ve recently realized that ‘running late’ is a fabulous time to test my boys capabilities because while I am busy concentrating on ‘not being late’ they don’t rely on me to intervene to help. I heap praise on Jeremy for being so helpful and independent.

I go to put the car into reverse gear. I haven’t driven an automatic car in years and really should have tested it out before the morning rush. “Uh oh, why won’t it reverse, it’s going forward…” (talking to myself). I look at the schematic representation of the gears on the gear stick handle but it doesn’t help me. I assume that I am in ‘first gear’ but I can’t adjust the gear stick any further left to where it should be.

My high-pitched exclamation of “What on Earth is going on?” starts to panic my boys and Damian asks if he can get out of the car. I try to reassure them “It’s OK, I’ll figure it out, don’t worry” hmmm good advice, deep breath.

I call my husband (who is already at work) “Thank GOD you answered! How do you put this car in reverse?” “Pull the plastic casing that is around the gear shaft up while you move it into position” Very unusual and very phallic, but it works. Why design a car like that? Why?  Someone’s idea of a joke?

We get to school two minutes late but at least I can write ‘car trouble’ as an excuse on the boys’ late notices. If I had have been more organized this morning things would have gone a lot smoother and we wouldn’t have been late. However, I’m allowed to be imperfect. I’m human and I’d had a very busy week the week before.

The day before, I had driven my cousin Kristen (not her real name) back to her home in the country; a seven hour round trip. My cousin had come to stay with us for the week as an alternative to ‘schoolies’. Schoolies is a newly emerging tradition in Australia, where students who have just completed secondary school, go on a week-long holiday with hundreds and thousands of other teenagers, in a city location away from their homes. The media enjoy displaying video footage of drunken teenagers stumbling around the city streets at night and getting arrested.

Throughout the week, Kristen and I went from one activity to the next; museums, zoos, shopping centres, markets and cinemas. We had one ‘rest day’ where we baked biscuits and cupcakes for Kristen to take back with her to share with her family. I burnt half the biscuits but the cupcakes all turned out well.

By the end of the week, I was dropping breakables, putting car keys through the washing machine and forgetting to put perishables back in the refrigerator. You get the picture. Regardless of my depleted mental capacity, it was worth it. Site-seeing had been a valuable and enjoyable experience for Kristen and I.

After returning to my usual routines for a few days and a hefty dose of quiet contemplation, I knew that my excessively muddled self would return to my somewhat muddled self and the mistakes would reduce in frequency. It was a process that I was used to.

You don’t always have to learn from mistakes. The greatest lesson I have learned from my years of experience with mistakes is that they happen, just like the expression “Shit happens!” Mistakes might be more likely to happen under some circumstances, such as when you are most busy and could least do with them, but that is OK too.

Don’t give yourself a hard time about being muddled; it’s so much more fun to laugh about it.

The Stigma of Parenting

At the end of this article, I want you to tally up your score to see how you rate as a parent….NOT! But it may have almost seemed like a reasonable request given the how readily advice is given on parenting in magazines, books and on websites.

The awareness that we can affect the course of our children’s life journey has made us paranoid that every little thing we say and do could mean the difference between them being unhappy and happy in life.

Advice is wonderful; pick and choose which strategies you and your family feels most comfortable with but avoid sources of advice that suggest that their way is the best way for everyone and/or that you will be a ‘bad’ parent or ‘practice bad parenting’ if you choose to do things differently.

There is no ‘good’ or ‘bad’ parenting, just different parenting styles and different choices by different parents under different circumstances for different children.

With regards to your own parenting, don’t ask how you can be a better parent; ask how you can help your child to achieve a specific goal or to manage a specific challenge. Doubting your overall parenting is not helpful and it puts your mental health at risk by increasing your anxiety and feelings of guilt.

Just recently Jeremy expressed an observation that he made to me. He said “Dad is the one who tells us what to do and that is what he does at work, he teaches people and you are the one who comes up with new ideas! You are like a scientist!” I loved that observation of course and my new title of ‘Work at home scientist’.

I reiterated what Jeremy said to my husband, who in his usual quick witted but not always tactful manner said “Yeah and the boys are your lab!” I laughed because I understood his sense of humour but some of you may already be making assumptions about me, given that comment.

I am not the ‘refrigerator mum’ that psychologists referred to before they disproved that prejudiced theory1,2 as responsible for autism in our children. I love my children deeply and I express that with plenty of hugs for both my boys and for Jeremy kisses (Damian hates kisses).

However, I do have a diagnosis of Autism Spectrum Disorder. Given that knowledge, would it be unreasonable to assume that you might judge my parenting ability by comparing it to those parents without a diagnosis of autism either subconsciously or consciously?

Recently, I read a disturbing post on a FacebookTM page promoting awareness of autism. Mostly, they post really uplifting articles but this time it was from an anonymous psychologist who made some very unfair judgements and generalisations:

“Truth be told there are days when I feel like a hanger-on in the court, part of the retinue of hired help. A participant in the parade the parents surround themselves with to show the world their level of commitment. Together we “professionals” form a palisade behind which the family hopes to hold off intrusions form the greater community. But, the moment we buy into the argument that “the world needs to change” (and not the family) we become unwitting diplomats in defence of dysfunction”

Clearly, the psychologist was blaming the parents for the behaviour and/or mental health of his clients that had autism. I and many other parents of children with autism who read that article were deeply offended with good reason.

To make matters worse, one reader made the following comment under the post:

“I think parenting is the biggest problem with autistic children. Instead of putting out the effort or taking responsibility for their own behaviour and bad parenting ideas they blame the Autism and everything and everyone else. They have the attitude that it’s never the parent’s fault how a child turns out when in fact it is. It’s a pattern I see on all the Autism pages and groups. Would the parents have accepted help? Probably not. We need to treat families, not just individuals, and it isn’t someone else’s responsibility to fix another’s bad parenting. There are a lot of good teenagers out there autistic and not…but they choose not to see that because it doesn’t live up to their stereotypes. The people who whine about blaming the parents are the worst parents of all, after all Autism is genetic.”

I feel the need to address that highly prejudiced comment, sentence by sentence.

“I think parenting is the biggest problem with autistic children”

The author of that comment has shown from the beginning her position of extreme prejudice by referring to children with autism as a ‘problem’.

“Instead of putting out the effort or taking responsibility for their own behaviour and bad parenting ideas they blame the Autism and everything and everyone else”.

By definition, autism is the reason for atypical behaviour not an excuse. In fact, diagnosis of autism is made based on those restrictive and repetitive behaviours and the behaviours that represent social communication challenges in the first place.

The facts are that mother-child relationships of children with autism have been shown to be of good quality2,3,4 and even when under significantly more stress due to the increased challenges of parenting a child with autism cope just as well with parenting tasks as any other mother4.

“It’s a pattern I see on all the Autism pages and groups”.

That is because the author is clearly more ignorant than most of the people on the pages and groups that she refers to. People who are members of autism pages and groups are much more likely to have more experience and knowledge of autism than people who are not members and so lack the prejudice of the average person with regard to autism (as would be discussed on more general FacebookTM pages and groups).

“Would the parents have accepted help? Probably not. We need to treat families, not just individuals, and it isn’t someone else’s responsibility to fix another’s bad parenting”.

Parents with children with autism are seeking help all the time, I am one example of that and every other parent of a child with autism that I know also does that, so her comment is an unfair assumption and exposes her biased opinion. The author says that families not individuals need to be treated, which most therapists actually do (Jeremy’s child psychologist worked primarily with me, providing me with strategies for Jeremy’s behaviour and other therapists have trained me to administer basic therapies at home in between appointments) but then she contradicts herself by saying that no one else should be responsible for ‘fixing’ another’s ‘bad’ parenting.

It is not ‘bad’ parenting; it is the need for additional strategies to help the child with autism cope with their unique challenges. In fact, it is an important aspect of the overall management of autism that families are supported, educated and guided by general practitioners and other health care professionals5.

“There are a lot of good teenagers out there autistic and not, but they choose not to see that because it doesn’t live up to their stereotypes”.

The author is forgetting that autism by definition is a ‘spectrum’ and that each child will have different challenges and therefore a different expression of challenging behaviours. Was I an example of a more functioning teenager because I had a more passive presentation of autism and I said nothing to anyone and suffered in silence? No of course not.

Most parents of children with autism are aware that each child on the spectrum is unique. I have mostly found that it is the ignorant people that rely on stereotypes and sure enough, the author is employing the use of a stereotype in the first place by referring to ‘good’ and ‘bad’ teenagers.

“The people who whine about blaming the parents are the worst parents of all, after all Autism is genetic.”

And there we have it, the icing on the cake; the author implies that a person with autism must be a flawed parent.  Firstly, she says don’t blame the autism for the child’s behaviour but then she contradicts herself by implying that parent probably has autism and that autism must make them an inferior parent.

In addition, according to the author, because I am ‘whining about blaming the parent’, I am the worst parent of all. Like anyone else, I am not perfect but I know that I have reached a point in my life with parenting where I confidently and consistently apply effective strategies to help my children overcome their challenges and I love and respect them like no-one else ever could. My ‘whining’ as the author states it, is me expressing the feelings of alienation and outrage due to her prejudiced comments and if there is one thing I have learned over time you should always validate people’s feelings.

It must be remembered that parents are not born into their carer roles regardless of disability and that they are constantly learning and evolving. In fact, a recent journal article on mothers of children with disabilities that I read, highlighted the unique skills and competence that the mother acquires and refines over the course of their experiences ‘through the process of negotiating, advocating and mediating on behalf of their children, at times resisting or challenging the dominant social order, educating others and so on’6.

The authors of the article also argue that ‘mothers are more than allies to their disabled children, as they experience directly and by proxy many of the discriminatory practices and attitudes their disabled child face’6.

Indeed, families of a child with autism have been shown to experience significant stigmatization from the community in the form of blame for the onset of autism or its deterioration, social avoidance, pity and contamination7.

An excellent review on the effects of stigma on population health inequalities states that ‘stigma thwarts, undermines, or exacerbates several processes (i.e., availability of resources, social relationships, psychological and behavioral responses, stress) that ultimately lead to adverse health outcomes’8.

Parents are people in their own right, imperfect but doing their best for their child/children who they love. They deserve respect as individuals and should not be stigmatized. Stigma is an extra disadvantage that we all have the right to do without.

Note: AMAZE produces an Alert Card that can improve awareness of bystanders when the behaviour of your child is attracting unwanted attention. Details of this card can be found on the AMAZE website.

References:

  1. Folstein, S.E and Rosen-Sheidley, B. Genetics of autism: Complex aetiology for a heterogeneous disorder. Nature Reviews Genetics 2001; 2: 943-955
  2. Orsmond, G.I. Mailick Seltzer, M. Greenberg, J.S. Wyngaarden Krauss, M. mother-child relationship quality among adolescents and adults with autism. American Journal on Mental Retardation 2006; 111(2): 121-137
  3. Montes, G and Halterman, J.S. Psychological functioning and coping among mothers of children with autism: A population-based study. Pediatrics 2007; 119:e1040-1046
  4. Smith, L. E. Greenberg, J. S. Mailick Seltzer, M. Hong J. Symptoms and behavior problems of adolescents and adults with autism: Effects of mother-child relationship quality, warmth, and praise. American Journal of Mental Retardation 2008; 113(5): 387-402
  5. Myers, S.M and Plauche Johnson, C. Management of children with autism spectrum disorders. Pediatrics 2007; 120: 1162-1182
  6. Ryan, S. Runswick-Cole, K. Repositioning mothers: Mothers, disabled children and disability studies. Disability & Society 2008; 23(3):199-210
  7. Milacic-Vidojevic, I. Gligorovic, M. Dragojevic, N. Tendency towards stigmatization of families of a person with autistic spectrum disorders. International Journal of Social Psychiatry 2012; DOI: 10.1177/0020764012463298
  8. Hatzenbuehler, M. L. Phelan, J.C. Link, B.G. Stigma as a fundamental cause of population health inequalities. American Journal of Public Health2013; 103(5):813-821