Decoding “problem” behaviours in children with autism

problem_behaviour

Written by Kim Rose & Michael McCann (Autism and Behavioural Science students at Mohawk College)

Is your child exhibiting “problem” behaviour in the home or at school? Perhaps you’ve been wondering why your child with autism is exhibiting these behaviours and what to do about them, or even how to explain those to your child’s school?

Today, we reveal three behaviours we frequently see in children with autism and give you some ways to handle them:

  1. The classic “stimming”: The term “stimming,” refers to the behaviours that children may be engaging in in order to bring themselves to a “happy place.” If a child is in a set of circumstances that he or she finds very uncomfortable, such as being in a room with people he or she doesn’t know, the child may start engaging in behaviour that will make him or her more calm, such as hand flapping or screaming. Stimming can also be seen when the child is very excited. This is not an attention-seeking behaviour, so much as a way to self-regulate and calm down; it is also a way of communicating about how we feel in a situation (overwhelmed, anxious, excited, etc.). It’s important for parents to learn how to ‘read’ those behaviours to know what step of action to take: reducing sensory input, letting the child calm on his own, or just plain letting him show he’s happy! These behaviours will evolve with time as the child learns alternative ways of self-regulating.
  2. Escape: We’ve all been there as children – not wanting to do our chores and misbehaving instead: we would do anything to avoid doing those chores. That is what we call escape behaviour. If you child is running away or displaying behaviours when request has been made, your child may be trying to communicate with you. Maybe what you’ve asked is anxiety provoking or your child is engaged in something else that he does not want to let go. In those instances, try to see what you child CAN do. Maybe you can reduce expectations (for example, instead of eating all of their portion of vegetables, only have 5 bites) and reward their effort heavily with praise. And remember, practice makes perfect, and this is true for escape as well. If you child manages to escape, know that your child has learned exactly what to do next time he does not want to eat his veggies.
  3. Desiring “preferred” items, and nothing else: We all have our preferences (our favourite jeans, our favourite food, etc) – if given the choice, we may want to have those all the time! However, most of us understand we can’t. However, children on the spectrum tend to be rigid in their preferences and be unwilling to try something else. This rigidity often leads to meltdowns, which then create chaos in the house (been there?). In order to increase flexibility, the ‘first, then’ method can be used. For example, if you child only wants to eat the white pasta on their plate, and refuses to eat the carrots he used to eat, ask that a bite of carrot be taken first, then a bite of pasta. And praise! Same idea if your child always plays with the same toy: give another toy first, and then give the preferred one. Flexibility can only be built with practice!

Always remember, no matter what the behaviour is, your child is trying to communicate with you on the level that he or she is capable of. If you’re having trouble finding what the function of a behaviour is and how to respond, make sure to consult with your child’s team!

Thinking of having another child to care for your child with disability? (Part 8)

Autism Sibling
75% of siblings who act as caregivers for an adult with a developmental disability say that caring is their full-time job

This is Part 8 of our 10-Part blog series about the challenges and experiences of the siblings of kids with a diagnosis. Be sure to check back for future posts in the series.

Read all posts from this series: Part 1 | Part 2 | Part 3 | Part 4 | Part 5 | Part 6 | Part 7 | Part 8 | Part 9 | Part 10

Jess brought up some important food for thought in her last blog…should a parent plan to have another child to become a carer for their child with a disability? That’s a difficult question to answer, since there so many variables need to be taken into account.

Here are the first two important questions to ask yourself before making your decision:

  1. What if the sibling isn’t willing to care for their sibling? Assuming that the sibling will be able to care for the child with a disability, one needs to consider whether the child will be willing to care for their sibling, and to what extent. Baby making being quite the lottery, it’s impossible to predict what temperament, personality and interests a sibling will have. On the psychological end, it is also important to consider the impact of the perceived responsibility of having to care for a sibling on a child, such as increased stress.
  2. What if the second child doesn’t have the skills needed to be a carer? Depending on the diagnosis, there may be a chance that a sibling would have the similar needs as the first child. A study published in Pediatrics (Ozonoff et al., 2011) showed that there is an almost threefold increase in risk for siblings of children with autism to also develop ASD; this risk was particularly high for male siblings and those who had more than one affected sibling. Research also shows that parents who have had one child with cerebral palsy, the risk of recurrence for cerebral palsy was more than nine-fold for a subsequent sibling (Tollanes et al., 2014). When a child’s disability is not genetically-related (for example, for a child with a traumatic brain injury), this would obviously not apply.

Now, maybe you always dreamt of having a large family? Or the joys of having a child, no matter what their abilities or interests are, is more important to you than the potential risk? These are important factors to take into account, as they will change your personal sense of satisfaction and well-being as a parent. The important distinction I would make would be whether you’re thinking of having another child, or planning to have a carer for your child with disability. A survey conducted in 2012 for Easter Seals showed that 75% of siblings who act as caregivers for an adult with a developmental disability say that caring is their full-time job. Moreover, 30% say they receive no emotional, physical or financial support from other friends and family. Ensuring that there is some support in place for the caregiving sibling would therefore be crucial. On the bright side, though, 80% of respondents reported having a close relationship with their disabled sibling which had a positive impact on their life. It would be expected that a sibling who had a good relationship with the child with a disability might be more willing to become a carer (see my last blog post on how to promote a positive relationship between siblings). But there’s never any guarantee. This is an important and complex decision; it would be difficult to expect a child to automatically step in as the carer, but this is a place where the siblings and the individual with a disability should be involved in the decision-making.

Don’t miss on our last week of siblings’ blogs, we’ll discuss the role of siblings in fostering independence!

Should a sibling be the carer for a child with autism or other disabilities? (Part 7)

Autism
Our family has realized that the designation of the ‘future carer’ role isn’t a one-time decision, nor is it necessarily an obvious one.

This is Part 7 of our 10-Part blog series about the challenges and experiences of the siblings of kids with a diagnosis. Be sure to check back for future posts in the series.

Read all posts from this series: Part 1 | Part 2 | Part 3 | Part 4 | Part 5 | Part 6 | Part 7 | Part 8 | Part 9 | Part 10

Written by Jess Urcuyo

“Should we have a second child to become the carer for our disabled child?” – I recently read this question on a parent support Facebook group. Clearly, it was a parent who is desperately trying to plan for the likely situation that their child with exceptionalities will outlive them as parents. A parent who realizes their child may continue to be dependent on others for help after they themselves pass away or are unable to continue the parent-carer role. A parent who may not have considered the impact this thinking could have on the life of their second child.

In my family, I’m the only girl and I trained to be a pediatric therapist. Regardless of the life choices my siblings made, if stereotypes prevail, I would be the obvious choice to become the dedicated carer for my brother’s future, right?

But what about the sibling’s choice? In a society where our governments are ill-prepared to support the strengths and needs of an aging population with developmental delays and/or autism, should a sibling of a child with exceptionalities be expected to become their dedicated carer in future years when their parents have passed away?

What about the choice of the person with additional needs? What if they don’t have a good relationship with the sibling dedicated to be their carer in future years? What if they need a different style of support than that sibling is able to offer to ensure they continue to develop their independence?

Bearing in mind the challenges we’ve previously explored, that our siblings often experience with identity, self-advocacy, and assertiveness, I encourage parents to consider future planning for each child in the family as an individual. Some siblings, such as myself, feel well equipped to be the designated future carer and have a positive relationship with their sibling with exceptional needs (such as Autism). Other siblings may not feel as well placed, may not have a good relationship, or for many other reasons, may chose not to take this role. Some families may choose to collaborate to provide support for the sibling with exceptional needs so that the responsibility doesn’t fall to one individual.

Any end-of-life discussion has the potential to be a heavy weight on people’s minds. In the case of a sibling who is dependent on their parents for support, it is an important conversation that is best started sooner rather than later to ensure everyone’s voice is heard and continues to be heard as life situations change.

In our family we’ve realized that the designation of the ‘future carer’ role isn’t a one-time decision, nor is it necessarily an obvious one. It’s an open conversation that will be revisited as often as needed, with all parties involved having a clear voice. When the time comes, we hope we’ll make a decision that is right for everyone involved. A decision that supports the independence and life choices of all the siblings in our family.

Check pack tomorrow for part 8, where we discuss things to think about if you’re considering having another child to become a carer for their child with a disability.

4 Tips to promote sibling relationships for children with disabilities like autism (Part 6)

Autism Siblings
Create opportunities for the siblings to share activities together, as equals.

This is Part 6 of our 10-Part blog series about the challenges and experiences of the siblings of kids with a diagnosis. Be sure to check back for future posts in the series.

Read all posts from this series: Part 1 | Part 2 | Part 3 | Part 4 | Part 5 | Part 6 | Part 7 | Part 8 | Part 9 | Part 10

Jess’ blog post from yesterday is a great illustration of the power of siblings. Jess did seem to have a budding Occupational Therapist growing in her early on! But, no matter what siblings’ aspirations are, they may be interested in being involved in the care of their siblings. Given that siblings will likely be in the lives of children with a disability (such as autism) longer than anyone else (after all, they are likely to outlive parents, and will definitely have a longer relationship than with any therapist the child might encounter), the sibling relationship is an important one to foster.

4 Tips to help foster the sibling relationship:

  1. Create opportunities for the siblings to share activities together, as equals. For example, this could involve drawing a picture, decorating cookies or creating figurines out of play dough. Make sure this is an activity where each child gets to make their own creation, rather than having the sibling be the assistant of the child with a disability. Respect for each other’s respective skills and abilities should be taught, to ensure this does not become a competition, but rather an acknowledgement that everyone is different and can do different things.
  2. Encourage your children as they learn to communicate with each other. This may not always be in a verbal way, or not always the way you would prefer they would communicate (and it may not follow what their therapist has recommended), but remember this is a special relationship…and having their own special way of communicating can be part of it.
  3. That’s also true for other activities: encourage creativity and do listen for the sibling’s opinion when the family is facing a problem. Siblings have an interesting perspective: not only do they know the child well, but they are also a child themselves. Maybe they’ll have an idea as to what is bothering their brother or sister, or how to overcome a problem.
  4. Make sure the nondisabled sibling does not get a disproportionate burden in the household. Siblings’ feelings of resentment can be a huge obstacle to a positive bond. Encourage them to have their own friends and activities, and do not make their list of chores twice as long because their sibling might not be able to help. Rather, find ways to insure everyone can participate in their own way.

Stay tuned for next week’s blogs! We’ll be talking some more about the planning for the future and the sibling’s role and perspective.

How I cultivated my relationship with my brother who has autism (Part 5)

Siblings with Autism
I encourage parents to provide opportunities and space for the relationship to grow on their own terms.

This is Part 5 of our 10-Part blog series about the challenges and experiences of the siblings of kids with a diagnosis. Be sure to check back for future posts in the series.

Read all posts from this series: Part 1 | Part 2 | Part 3 | Part 4 | Part 5 | Part 6 | Part 7 | Part 8 | Part 9 | Part 10

Written by Jess Urcuyo

Growing up my younger brother had an intense fear of his belly button being touched. No bathwater above his hips, no showers, no spot cleaning. Lots of swimming!

My parents had tried in vain to tackle this from all angles and there was no solution coming from any of the autism professionals we’d consulted. My sibling sense was growing strong…he needed us to turn bath-time into a mad science experiment. Thankfully, my parents gave me free rein to try my crazy idea.

I made a trip to Lush, a handmade cosmetic store that could hold a sensory seeker under detention for days without complaint. Returning with a menu of weird and wonderful bath bombs and bubble bars, I ran the tub for my little brother. He watched in awe as the water turned amazing colours, fizzing and bubbling like the day a prankster had filled the city fountain with dish detergent. Through laughing, learning, and letting him go at his own pace, we emerged victorious.

We replicated the success several times in the coming weeks. But the real success story wasn’t cleanliness. It was the trust that had been built between my brother and me. I was finally starting to understand how his brain worked and he was allowing me to push his boundaries. It wasn’t until his language developed sufficiently that he could explain the true nature of his fear. He thought his belly button was a hole directly into his abdomen. That’s some trust!

Since then there have been many situations where when others have hit a brick wall, my brother and I have been able to work together to a solution. Many siblings have a special bond, but in my experience of families with children with exceptional needs, often a sibling becomes their closest ally.

Where siblings choose to go further to understand and support their brother or sister with exceptionalities, I encourage parents to provide opportunities and space for the relationship to grow on their own terms. To cultivate unconditional security between siblings, in which parental priorities can be skewed and house rules bent a little. And to encourage creativity to experiment for solutions.

How to explain a diagnosis like autism to siblings (Part 4)

Autism Diagnosis Conversation
Parents are often also concerned about the impact their child’s difficulties has on their siblings.

This is Part 4 of our 10-Part blog series about the challenges and experiences of the siblings of kids with a diagnosis. Be sure to check back for future posts in the series.

Read all posts from this series: Part 1 | Part 2 | Part 3 | Part 4 | Part 5 | Part 6 | Part 7 | Part 8 | Part 9 | Part 10

One of the first questions parents often ask me is how to talk about a diagnosis to the child who is concerned. That’s a big question on its own. Parents are often also concerned about the impact their child’s difficulties has on their siblings, and wonder what they should say, if anything at all.

Jess’ experience is a great example of how information about a diagnosis can be shared. No ‘Big Conversation’, just learning as we go along- for everyone! As the child improves on certain skills, and struggles with others, more explanations will be need to be given. The important is to insure lines of communications are open- if anyone has questions that are are asked respectfully, they should be answered.

But just how much can be said-and how? This really depends on the age of the sibling. Here are some pointers:
  • Children ages 2-3: Clear, short and simple explanation focusing on the behaviours and ‘Why’. For example, ‘Johnny finds it hard to talk because his brain works a little differently.’
  • Children ages 3-6: Illustrated books can be a great way to foster understanding in non-judgemental ways. Here are a few ideas:
  • Children ages 6-9: Books are still a great idea. At this age, children are able to understand more abstract ideas and concepts. They may ask about whether it’s possible to catch whatever disability their sibling has and understand that all of their sibling’s difficulties come together and have a name (e.g. cerebral palsy, autism, etc.).
  • Children 9 and up: Older children and adolescents are now capable of understanding in more depth their siblings difficulties. As mentioned in my previous blog, acknowledging their experiences as siblings is very important. Children in this age range may benefits from books like ‘Views from Our Shoes’, which consists of essays written by siblings of children with a wide variety of disabilities. More detailed written information (which can easily be found online) regarding the characteristics of children with a similar disability can also be useful.

Check back next Wednesday for The progression of my brother with autism and my relationship (Part 5).

How I learned about my brother’s autism diagnosis (Part 3)

Autism
Our parents made the brave decision to share their journey with as they were learning.

This is Part 3 of our 10-Part blog series about the challenges and experiences of the siblings of kids with a diagnosis. Be sure to check back for future posts in the series.

Read all posts from this series: Part 1 | Part 2 | Part 3 | Part 4 | Part 5 | Part 6 | Part 7 | Part 8 | Part 9 | Part 10

 

Written By Jess Urcuyo

Here’s how it went.

Them: “Do you want the good news or the bad news? The bad news is we won’t be getting the donkey we were planning for. The good news is you’re going to have a baby brother!”

Us: “Woah…hold the phone…we’re not getting the donkey?”

When my younger brother was born, my parents knew something was a little different. As he developed, they continued to see red flags that later turned into a diagnosis of autism. Despite being 7 years old when he was born, I don’t remember the Big Conversation about the fact he had autism. Neither does my older brother. Because there wasn’t one. The only Big Conversation we had was the Donkey Conversation.

Our parents made the brave decision to share their journey with as they were learning. Brave, because they didn’t know route or the destination. They reasoned that by being open with us about my brother’s challenges, we would all be more accepting of his needs. They would tell us ‘his brain is wired a little differently’ or ‘he just learns in a different way’. They would point out how we were also different. As they learned more, so did we.

We learnt as a family, and that included our grandparents. In fact, it was my grandmother who first saw a poster describing what autism was, recognizing her youngest grandson in the blur of words.

In time, we learnt that autism was just a way to describe the things we already knew about our brother, that he’d get more help at school if he had a label, and what the heck a label was anyway.

Our brother learnt what autism was too. Occasionally he’d use it as an escape route to avoid things he didn’t want to do, but more often it would give him a framework. A framework to understand a world that is wired a little differently, that just learns in a different way.

These days, the choice to disclose is up to him. It’s his medical record after all. There’s no need for a Big Conversation…unless of course that donkey is still available. Now we’re talking!

Check back tomorrow for How to explain a diagnosis like autism to siblings (Part 4)!

 

Are video games associated with depression in preadolescents?

VideoGames_Depression

Written by Marie-Eve Dubios

Well, it sure sounds that way according to a recent study conducted at the University of Texas Health Science Center. While there is a wealth of research showing how exposure to violent video games leads to increases in aggressive behaviours, the study conducted by Dr. Susan Toladero and her colleagues (2014) was among the first to show that preadolescents who are exposed to violent video games for more than 2 hours per day are also at risk of becoming depressed.

Why would that be? There’s a few reasons for that, in my opinion. A big part of this is that spending more than two hours per day playing violent video games cuts into time for positive interactions with friends, which are crucial at that age. Indeed, social isolation is an important contributing in the vicious cycle that is depression. Once a person becomes socially isolated and spends long periods of time playing video games or engaging with social media, they are likely becoming increasingly sedentary…which is bad news since reduced sleep and lack of exercise also contribute to risk for depression.

What can be done, then, especially when talking about those video games is such a big part of a child’s social interactions?

  1. Placing limits on the number of hours of screen time, especially for violent games. Indeed, the same study showed that symptoms of depression were not increased when children played less than two hours of nonviolent games per day.
  2. Encouraging physical activity: not only does it keep us fit, but it makes our brain release endorphin’s, which make us happy.
  3. Encouraging interaction with peers outside of video games.

For most children and adolescents, these small tweaks will be sufficient to decrease their risk of depression. However, if you find yourself struggling with encouraging your child or teenager to make these changes, or if they experience more severe symptoms (decreased interest in activities, lack of pleasure, difficulties to concentrate, low energy and poor self-esteem), it may be best to look for professional help. Depression tends to have a chronic course, with more symptoms and recurring episodes only increasing the risk for future bouts of depression. Getting help early not only helps in reducing this risk, but also in giving children and teenagers the tools they need to take care of themselves.

5 Tips to promote well-being in siblings of children with disabilities (Part 2)

Talk - Sibling of Autism
If your child’s disability is affecting the time and attention their siblings are getting, acknowledge that.

This is Part 2 of our 10-Part blog series about the challenges and experiences of the siblings of kids with a diagnosis. Be sure to check back for future posts in the series. 

Read all posts from this series: Part 1 | Part 2 | Part 3 | Part 4 | Part 5 | Part 6 | Part 7 | Part 8 | Part 9 | Part 10

As Jess expressed it in her blog post yesterday, growing up as a sibling of a child with disabilities is not always easy. Whether it is because their life is arranged around their sibling’s appointments, because they get bullied at school as a result of a sibling with a disability, or because they worry about their family’s well-being, we know that these children are at a greater risk of developing a range of emotional and behavioural problems than those raised with typically developing children. No matter whether these problems arise out of feelings of jealousy over the sibling being ‘allowed’ to misbehave when they’re not, or worry over their family’s situation, they are important to acknowledge. A recent study (Vermaes et al., 2013) showed that siblings of children with chronic health problems were at an increased risk of developing internalizing problems like anxiety and depression.

By now, you’re probably thinking ‘Well, that’s really the last thing I need to add on my plate!’. Thankfully though, there are some fairly simple ways to make things easier for your typically developing children-without you feeling even more overwhelmed than you already are:

  1. Be open about the unfairness of the situation. If your child’s disability is affecting the time and attention their siblings are getting, acknowledge that. The goal here is not to make the child with a disability feel bad for the situation, but rather to let the typically developing child know that you recognize they have needs too. [click to tweet]
  2. Create ‘special time’ with each child. ‘Special time’ is time dedicated from one parent alone with only one child. The time commitment here does not need to be particularly long: even only 5 minutes per day would suffice- as long as it is clear during that time that children will not be competing for your attention. [click to tweet]
  3. Let your typically developing child know that it’s okay to have negative feelings towards their siblings from time to time. What they are feeling is normal, and you do not love them any less because of it. [click to tweet]
  4. Make sure your child has a safe place to share these feelings. For those children who feel uncomfortable discussing their feelings with their parents, a sibling group may be helpful. It’s a great way to meet other youth going through similar things. Even if the time spent in the group isn’t always spent discussing the experience of having a sibling with a disability, it feels nice to know that others feel the same way you are and won’t judge you for it.  [click to tweet]
  5. Sometimes, siblings need their own special time where they feel free to talk about their feelings with an adult outside the family. If the child is not experiencing severe difficulties, trying to set up a Big Brother or Big Sister might be a good idea. However, sometimes, professional help is needed. The important part is that your child finds someone they can connect and share their feelings with. [click to tweet]

Check back next Wednesday for How I learned about my brother’s autism diagnosis (Part 3) or as Jess would call it, the Donkey Conversation!

5 Tips to keep your children strong in the face of terrorism

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Written by Marie-Eve Dubois

This week, we’ve been surprised and shocked by brutal and violent attacks against Canadian military. On Monday, Warrant Officer Patrice Vincent was rammed over and killed, only 20 minutes away from my hometown, where one of my uncle is a military. On Wednesday, Cpl Nathan Cirillo was shot in front the National War Memorial in Ottawa. Needless to say, these attacks have hit close to home. As Canadians, this is not a reality we are used to- we live in a peaceful and safe country, right?

Now that our reality has changed and that these attacks are all we hear about on TV, one important question for many parents is: ‘Should I talk about this with my children? How?’ While it may seem tempting not to talk about this topic for fear that it will make children worry, this approach is one that may actually backfire. Remember that having a child keep their anxious feelings to themselves will be more damaging then having an open discussion about it. And ultimately, if they don’t hear about it from you, they will hear about it elsewhere (school, friends, etc.).

Here are a few steps if you’re wondering about how to have this discussion:

  1. Ask your children what they have heard about the events. It is not unusual for news to get distorted-think Chinese telephone. You want to make sure the information your child has is accurate. [click to tweet]
  2. Explore what is confusing, scary or troublesome for your child. Once information has entered our brain, we can interpret it in numerous ways. [click to tweet]
  3. Validate your child’s emotions. It is normal to be shocked and scared. Telling a child not to worry won’t make it better. [click to tweet]
  4. Examine what your child is making of that information and those feelings. Is your child paralyzed by fear? Does he have unrealistic ideas about what could happen? If so, try to deconstruct those thoughts. [click to tweet]
  5. Be ready to answer questions and address fears for a little while. New issues and concerns may appear over time as a child mulls over the events, develops an understanding of what has happened and what it implies. [click to tweet]

Keep in mind that these strategies should be adapted to each child’s developmental level. Also, each child will respond differently to these types of events, depending on their personality. Children who have a tendency to be anxious may react more strongly to these types of events.

Our thoughts and prayers are with the families of the victims. In the face of terrorism, let’s stay strong.