Tag: ASD

Making the holidays manageable for kids on the spectrum
Making the holidays manageable for kids on the spectrum

The holidays are supposed to be full of fun and relaxation – but to many kids on the spectrum (and their parents), they are just the opposite. Between the increased social engagements, the lack of familiar routine, and the sensory overload happening everywhere – the holidays can be really tough. And that’s not even counting gift giving which I wrote about last week. I’ve rounded up some of my best tips for a happy and hopefully less stressful holiday season.
- Don’t over-schedule yourself – tempting though it is, one event per day is probably enough. Most kids have exhausted their coping skills after the first event and need time to recharge before heading out to another event.
- Headphones are a huge help at blocking out sensory distractions. You may need to do some advance work with family or friends who think it’s rude for your child to wear headphones in public or at a gathering. Simply explain how they help your child and leave it at that.
- Have a safe place where your child can go if overwhelmed. Use an inexpensive bathmat as the “safe spot” and bring it with you when visiting – I practice this with the kids for a few days or weeks before the first event. These adorable round spots from Ikea are great for “safe spots”. There are also more intricate patterns available if that is soothing to your child.
These are a great size for travelling – but you can also use a bathmat or small towel.
- Bring along some toys / activities your child can use when overwhelmed. Even (or especially) if they will be getting new toys at the event, bring a toy or two that you *know* your child will enjoy playing with – just in case. The new toy may need batteries that aren’t included in order to work, or it may not be something your child is into. Having a backup will prevent frustration and upset for your child.
- If the event is at your house and there will be other children present, work with your child in the days or weeks before the event to figure out which toys he is comfortable sharing and which ones need to be put away before the party. Ask him again on the day of the party if there is any toy he doesn’t want others to play with.
- Make sure that your child still has somewhere to escape to at your house – try to leave her room untouched if at all possible, so that if she needs to escape, she can.
- Role play potential situations that could come up at a party. One that takes many by surprise is what to do if the washroom is occupied. If you have multiple washrooms (or even better an ensuite one) designate one as the guest washroom and the other for family use. Some kids with autism have delayed signals that they need to use the bathroom so waiting in a line-up can lead to accidents.
- Use a calendar or visual timetable to prepare for Christmas, for specific events, to highlight school days and home days, or the night when Nana is coming to sleep.
- Set up a daily calendar using a white board to outline what will be happening each day. Visual schedule tools can also help.
- Try using a visual schedule if you are celebrating the holidays on more than one day (e.g., Hanukah) to show when there will be parties/gifts and when there will not – otherwise the child may expect gifts every day.
- Make sure you give plenty of advance warning for changes – “In 15 minutes, we are going to put on our coats and say good bye to Grandma” is a good cue before transitioning to another activity, repeat the warnings as needed so that your child isn’t surprised by the change of activity.
- Be careful with “fun” traditions such as elf on the shelf. We may think it’s fun but for a child who is anxious about being watched, an elf that watches and reports back to Santa is highly stressful. (Same goes with some Christmas carols – the line in Santa Claus is coming to town “He sees you when you’re sleeping, he knows if you’re awake” can be very stressful for some children. Actually, the whole idea of a stranger coming into the home while they are sleeping can be very stressful for some children. If your child is showing signs of stress over the elf, it may be time to send it back to the North Pole or try an alternative tradition.
- Consider decorating gradually – so the house doesn’t transform overnight. One day you could put the Christmas tree in position, decorate it the next day, then put up other decorations even later (if at all).
- On the decoratios front, be aware of how your child reacts to different decorations. Flashing and noisy ones may upset some children. Motion activated ones (Like a Santa that says “Ho Ho Ho” as you walk by) can be very distressing to kids (and adults!) so those may have to either find a new home or be switched off until the child is ready.
- Have “the talk” with your family members. If your child hates being hugged, and Great Aunt Sally is a hugger – you need to explain that to her. It may be uncomfortable, but you want both sides to have a good experience. Make them aware of your child’s self soothing behaviours and whether or not they should approach him if he’s in his “safe spot”. [If you’re part of the extended family of a child with autism, the best gift you could give the parents and the child is to listen to their cautions. They know what works and what won’t and a holiday is not the best time to suggest alternatives.]
- Keep mealtimes as consistent as possible. (Also make sure your child eats). Offer to bring something you know your child will eat if she is a picky eater. You can also feed your child before an event if needed and provide them with a quiet activity to do while the meal is being served.
- Model / practice buffet behaviour – washing hands before going to get food, not sticking hands in food / using utensils provided, what to do if you don’t like something, not going straight for the desserts – these are not common occurrences and your child may not know how to handle a buffet, so practice.
- You may want to find a less busy place for your child to eat if they are easily distracted, the kids’ table is generally pandemonium, so see if there’s somewhere a little quieter where he could eat with maybe 1 or 2 helpful older cousins.
- Don’t be surprised if your child doesn’t want to eat when everyone else is eating, then is ravenous once things are quieter. Set aside a plate for easy access later.
Try to make meals as stress free as possible
- Avoid shopping at peak times, or for extended periods of time. Malls are full of sensory stimuli – the carols being played over the speakers, the voices of other shoppers, the bells some charities use to collect donations, the over the top window displays, the smells of the food court, the feelings of fabrics – it all adds up to one seriously overstimulating experience. If you can manage it, try only taking your child to smaller free standing stores, and do it when there isn’t a crowd.
- Santa can be scary for kids. Some malls do a sensory sensitive Santa (try saying that 5 times fast), or open early on a weekend so sensory sensitive kids can visit Santa with fewer people around. If not, ask one of Santa’s helpers if perhaps your child could visit right at opening or closing when Santa tends to be less busy.
Photo Courtesy Lyall Cousins. Devonshire Mall Santa 2013
- Or, see Santa at a smaller event such as a pancake breakfast or a company holiday party and skip the mall Santa altogether.
I hope these tips make the holiday season a little less stressful. If all else fails, remember that it’s about the spirit of the season and having fun with your family, not about everything being perfect. (Spoiler alert – it’s never perfect, which is what makes it awesome.)
December 11, 2015
Teaching your child with ASD about gifts
Teaching your child with ASD about gifts

One of the most common questions I hear during the holiday season is “How do I teach my child gift etiquette?” Gift giving occasions with kids on the spectrum can be tricky to say the least. Gifts may overwhelm, kids may forget the social niceties we spend all year teaching them causing friends or relatives to get upset when a child forgets to thank them, or worse, is unable to tell one of the social white lies when a gift isn’t quite what was expected. I’ve known more than one child on the spectrum who blurted out “I didn’t want this”, “Yuck”,or “I already have this” when presented with a gift that wasn’t on their radar. I have previously written about buying gifts for kids with special needs so this post is going to focus on ways you can help your child both giving and receiving gifts.

A pile of wrapped gifts

Giving

Gift giving can be a really tough skill for kids to learn, and kids on the spectrum have a tougher time than most. There are quite a few strategies I’ve used to teach kids about giving (both gifts and in a larger, charitable sense) and others that friends have used successfully. It’s hit and miss what works with a particular kid, but with some trial and error, a method that works for a particular kid can almost always be found.
- Write your own social story about giving gifts to others. Important points to include are why we give gifts, and how to respond when thanked for a present. You can also include a section on choosing gifts if you wish. For a quick and easy social story maker I use ConnectAbility’s Visuals Engine. It’s free and you can download the story as a PDF and print it once made. Read the social story often leading up to the gift giving occasion. Make one specific to the holiday season and another one for other gift giving occasions such as birthday parties.
- Involve the child as much as possible in the process. From making a list of people he would like to give gifts to, to picking a suitable gift. You may need to model desired behaviour and show your own thinking “I know daddy likes cars, and needs socks, so he would like these socks with cars on them” – walk your child through how you pick out gifts for others. (Do this cautiously if the child is prone to blurting out to others what they’re getting, or do it with hypothetical gifts only)
- Help your child wrap the gifts. If your child becomes anxious about wrapping, use a box or a bag. If they really don’t want the gift hidden (and some kids don’t), then just put a bow on it.
- Use photos as gift tags to indicate who the present is for – this serves to remind the child that the gift is for another person (so may discourage them from opening it) and who the recipient is.
- Practice, Practice, Practice! Enlist an older sibling or friend and model gift giving (and receiving). When the child has seen the example a few times, have them switch into the scenario.
- Some spectrum kids pick things they really like for their friends and siblings and then don’t want to give it away. Make sure you talk about the recipient a lot when you’re buying the gift, and talk about how much they will enjoy it. They may still not want to give the gift away, but be firm and explain that it is not theirs.
- Kids who are rule followers may find the idea of social conventions comforting. So explaining in in terms of a “non-optional social convention” a la Big Bang Theory is a good way to introduce them to the rules of gift giving.(In general, I don’t believe that gift giving is a social obligation but for kids who need rules… this helps).
Receiving
- Practice opening gifts, taking turns and waiting for others, and giving gifts. Try to practice this daily. Wrap boxes with favourite toys and some new items to simulate the experience. Having an established order for opening gifts – each child opens one and the cycle continues.
- Role play scenarios with your child in preparation for him/her getting a gift they do not want. Give them the right words to use to politely accept a gift. “Thank you for thinking of me” works well.
- If your family tradition includes putting gifts under the Christmas tree, prepare well ahead of time by setting the rules (gifts are only to be opened when everybody is there, or after a certain time on Christmas morning). Perhaps wrap an empty box to see if your child is able to resist the temptation.
- Alternatively, wait until just before the holiday to set out gifts, especially large tempting ones.
- Wrap each family member’s presents in a distinct wrapping paper. That way the child knows which ones are theirs and hopefully won’t unwrap everybody’s presents looking for theirs.
- When opening gifts as a family, use a consistent order to open gifts. You can try a signal such as an ornament or large candy cane that is passed around to signal whose turn it is to open the next gift. This helps alleviate disorganization and the frustration of waiting.
- Set a limit on the number of gifts from extended family members and family friends. That way the child knows to expect 3 gifts from grandma and 2 from an aunt. This is very comforting to some kids on the spectrum.
- Gifts can be overwhelming – especially all at once… so don’t! Open gifts all day long, or over multiple days, whatever works for your family.
- Sometimes you will find that your child is only interested in playing with the gift he or she has just opened. Let them play. Forcing the child to move to the next present will only create a confrontational situation. Give them a timed warning “In 10 minutes, we’re going to open another gift”, and stick to it. Adjust the time limit if there’s a time sensitive situation like grandma needing to leave.
- Some children with ASD prefer that you leave their presents unwrapped – others want to know exactly what is in each gift. Surprises can be a source of anxiety, so try to honour your child’s wishes. You can move towards wrapping in steps – wrap a little more each day or week. Some kids are okay with a present wrapped if they know what’s inside. Experiment to see what works best for your child.
Gifts are part and parcel of the holiday season, but the stress and anxiety that often come with them don’t have to be. What are your best tips to make gift giving and receiving easier for your children?
December 2, 2015
Word Wednesday – with a twist!

Word Wednesday – with a twist!

In case you haven’t guessed I’m pretty passionate about my work with kids who have autism. This means that I occasionally get pulled into some of the Autism wars. I firmly believe that there are very few black and white situations in life, and even fewer in the world of autism. There’s a saying that if you’ve met one person with autism, then you’ve met one person with autism. Which is all well and good except it really doesn’t only apply to people with autism. Every person is different, and one-size-fits-all thinking should really be called one-size-really-fits-none.

Recently one of the kids I work with was told that he needs to stop calling himself “autistic” and use person first language, saying, “I am a person who has autism”. I understand why person-first language is great and why it should be the default when dealing with people you haven’t met. However, when someone who HAS autism, declares a preference for the term “autistic”, who are we to judge? This is a conscious decision made by the person most affected by the language and I, for one, will support his choice as well as his right to change his mind if he wishes to in the future.

The one thing I am very ardent about is the fact that I don’t see autism as a disease that needs to be cured. In fact, I don’t see it as a disease at all. I am a strong believer in the neurodiversity paradigm and the belief that autism is part of the natural neurological variance found in humans. The neurodiversity paradigm, has 3 main tenets: 1) that neurodiversity is a natural and valuable form of human diversity; 2) that the idea that there is one “correct” form of neurocognative functioning is an artificial construct and is no more helpful to society than the idea that there is one “correct” form of gender or ethnicity; and 3) that the social dynamics relating to neurodiversity are no different than the social dynamics of other forms of human diversity (ethnicity, culture, gender), including and especially that this diversity, if embraced, can be a source of creative potential.

I believe that people with autism should be welcomed into society and that we shouldn’t be trying to change them to become more like neurologically “typical” people. That isn’t to say that I believe we should abandon all programming and services for people with autism, because I believe that as they are neurological outliers on the bell curve, the world isn’t geared towards them and so there are some skills that need to be learned in order to have life be less frustrating for them and for those who care about them. In honour of this belief, today’s Word Wednesday word is neurodiversity.

Neurodiversity

The neurodiversity movement is relatively young, about 20 or so years old. The term was coined by an Australian social scientist who was on the autism spectrum, and has become more and more widespread as time goes on. The movement encompasses more than just the autism community now – other neurological differences such as learning disabilities (LD), obsessive-compulsive disorder (OCD), attention deficit hyperactivity disorder (ADHD), and bipolarity are part of the neurodiversity movement. I think part of the reason I like the neurodiversity movement so much is because I’ve always considered myself neurologically diverse – I have a learning disability, ADHD, and was identified as gifted in school – the triple threat of neurological differences. So I’m clearly in the neurodivergent camp.

The word is a compound word – comprised of the prefix neuro – which is from the Greek word neuron – which means nerve and is used in medicine to refer to things relating to the brain. The word diversity comes from the Latin word diversus – meaning separate, opposite, or different.

Neurodiversity (neur-o-di-ver-si-ty) noun

The infinite variation in neurocognative functioning in the human species.

September 23, 2015
An Open Letter to Parents of Special Needs Children

An Open Letter to Parents of Special Needs Children

I’ve got something to tell you, and I’m pretty sure you all need to hear it right about now. Whether it’s back to school time coming up shortly, or your kid has already been in school for the past few weeks, it’s going to be okay. It may not seem like it now – with the routine changes and the frustrations of explaining once again why sitting Johnny by the door is an invitation to disaster, but it will be okay.

I’m not just talking about school either. I’m talking long term here. I know you’re worried about your children and their ability to cope in a world that seems have the deck stacked against them. I understand your fear that your sensitive child will have his nascent ego shattered by an unkind word or action. I feel your frustration when the services that you worked so hard arrange fall through.

I get it. I really, really do.

So here’s the first phrase:

It’s going to be okay.

You will get through this with the love and support of friends and family. You will fight for your child with more ferocity and determination than you knew you possessed.

Your child will surprise you again and again with their resilience. They will fill your heart with joy as they progress towards their current goal. You will be there every step of the way, cheering their accomplishments, comforting them in their setbacks, and helping them get set to try again, because that’s what you do.

Now here’s the second phrase:

You are not alone.

You will get through this with the love and support of friends, family, and community supports. Your child will survive – and thrive – because there are so many great teachers, therapists, personal support workers, doctors, and parents out there to help them. They will shine as the world slowly changes to accept that different from does not mean less than.

You’re in the trenches day in and day out. It can be hard to see the forest when you’re staring at one tiny sapling bending in the wind, but I can see the forest. It’s beautiful and full of hope.

Our children are growing up learning that our differences make us special and that everyone deserves love and respect. Yes, there are some adults who never learned that lesson, but they are the minority. Most of the world sees your child not as an object of pity, but simply as another child. Don’t let the unfortunate few who have not moved with the times cast a shadow over your happiness – keep moving until you are no longer touched by their shadow.

As the parent of a special needs child, you are raising hope. You are raising part of the next generation, the generation who teach the world being different is awesome and everybody has something to contribute to society, even those who cannot speak for themselves, or those who are more finely in tune with their senses than the rest of us.

Children today are more accepting than even their parents, who, in turn, are more tolerant than the generation before them. Change doesn’t happen overnight but it does happen. The world is changing, slowly but surely, and kids like yours are the catalysts for this transformation.

Take a deep breath and repeat after me:

It’s going to be okay. Because you are not alone.

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August 28, 2015
So, Your Child is Having a Meltdown

So, Your Child is Having a Meltdown

As someone who works with kids on the spectrum, I’ve witnessed my fair share of meltdowns. As I said in my sensory 101 post, a meltdown is not a tantrum. A tantrum happens when a child wants something (a toy, candy, attention) and is not getting it. In contrast, a meltdown occurs when a child is overstimulated and cannot handle all of the stimuli in their environment. A child throwing a tantrum is attempting to change your behaviour, a child in the midst of a meltdown cannot change his. It’s all well and good to have this distinction in mind when things are going (relatively) smoothly, but when your child is the one having a meltdown it can be hard to remember they’re not trying to manipulate you. Here are some tips to help you survive your kid having a meltdown.

1. An Ounce of Prevention Can be a Godsend. Children don’t melt down out of the blue. There are usually warning signs. Every child has a different set of signals but some common ones are: increased agitation, rocking, crying, getting louder, repeating the same words over and over, appearing to ignore you (not responding to questions), or not wanting to be touched. The best case scenario here is that you see the meltdown coming and use a prearranged verbal or non verbal signal to usher your child to a safe and calming spot, use stress reduction techniques like deep breathing or meditation, or tactile stress relievers like a Sensory Ball, Massage Roller, or a Weighted Lap Pad. All of these sensory tools can help calm a child and prevent a meltdown before it starts. (As a note, you will need to work on the signals when a meltdown is not imminent – and as my friend Melissa points out, the language needs to be consistent across home, school, and relatives – anywhere the child will be. The more consistency in the language and actions, the more likely they will work when they need to.)

If you can’t manage to avoid the meltdown (and you won’t always be able to), here are some tips for when you’re in the eye of the storm.

2. Stay Calm. As your child gets louder, you may find yourself getting louder to be heard over them. This adds to the sensory stimuli and can prolong a meltdown. Any talking should be done in a calm, measured voice. Though it is unlikely that your child will remember anything you say or do while they are having a meltdown so if it’s important, wait.

3. Make Sure Your Child Is Safe – A child in the middle of a meltdown is not aware of her surroundings – she may accidentally injure herself. If possible, try to shepherd the child into a safer space – out of the kitchen where there are sharp knives for example.

4. Remove any stimuli you can from the environment. This can include siblings, music, scents, new fabrics, loud toys, or anything else you thing might be overloading your child’s senses. If it is possible, remove your child from the environment – if you are in a store, go back to your car and have a “time in” – sit with your child to ensure they are safe (see number 3 above), or carry your child to a safe room (usually their bedroom) that is free of the stimuli that is causing the meltdown.

5. Add in a calming stimulus. Depending on your kid, this could be an essential oil blend, a calming music mix on an ipod or other personal music player, a flashlight, a calming bottle, or a favourite toy to hug. It usually takes some trial and error, and again consistency is key – duplicates of whatever works need to be sent to school and triplicates kept on hand at home in case of loss.

My homemade calming bottle

5. Hug it out – Although it seems counter-intuitive, sometimes more stimulation in the form of a tight hug can help alleviate a meltdown. Many kids on the spectrum benefit from deep pressure so a tight hug or some time in a Giant Pea Pod can be a huge help. A Dynamic Movement BodySox can be just the right amount of pressure, but check reviews carefully, sometimes saving a few dollars results in getting a product that rips on the first use.

6. Remember – It’s Not About You. It can be hard to remember that your child isn’t doing this on purpose. Some days it feels like you just can’t take any more. Hopefully you have a support network you can call on to take the kids for an hour or two so that you can sit and have a coffee. It’s important for parents with kids on the spectrum to get some alone time. Not that it’s not important for all parents, but it has a way of slipping though the cracks for parents of special needs kids. If you don’t have friends or family who are able to watch your children, look into respite care. It will help you unwind and decompress which will in turn help your relationship with your child.

This small stuffed Perry the Platypus is one of the most requested stuffies in my calming bag.

Once a meltdown starts, it’s not easy to stop it but hopefully these tips make it a little more manageable.

April 20, 2015
Board games I like for kids on the Spectrum.

Board games I like for kids on the Spectrum.

Last week I blogged about how I use <a href=“https://jennannis.com/its-my-turn-the-challenges-of-turn-taking-with-kids-who-have-asd/” title=““It’s MY TURN” – The challenges of turn taking with kids who have ASD”>board games to help teach turn taking skills to kids with ASD. I’ve been asked what games I recommend and while I have some general guidelines and games that I always try out, not every game will be a hit with every kid. I mentioned last time that Chutes and Ladders can be tricky as there is an element of chance in it, but it doesn’t have any text to read (a great thing in a kid’s game) and some kids really love the game. Some games come in character variant like Dora the Explorer or Transformers so that they engage kids’ interest. If you can find a game the child is interested in, that’s half the battle right there – they’ve bought in. So, what games do I have in my stash for kids with ASD? It’s probably not what you’d expect.

I love to start with Guess Who? for kids who already have verbal skills because it helps them learn to ask questions as well as being a very visually based game. As a bonus, the faces also have expressions on them so you can re-use the board for teaching emotions. The game is really easy to learn and if there are any issues with which questions to ask, you can provide a list or give them some suggestions. Guess Who isn’t noisy – the loudest noise it makes is when the “wrong” pictures are flipped down – and if you do it quietly, it mitigates that nicely. There are versions without the faces – with animals or Disney characters so depending on what you want you can get a different version, though I prefer the original with the faces.

For kids whose verbal skills aren’t quite advanced enough, or for younger children, Lucky Ducks by Milton Bradley is a great beginner game. There are 12 ducks each with symbols on their undersides. The first person to find 3 ducks with matching symbols wins. It’s simple but still a lot of fun. Another great option for kids who can’t yet read is the ever-popular Candy Land. Candy Land is easy to play, requires no reading, just matching of colours and pictures. As a note, I recommend the “classic” version of the game over the newer “bookshelf” style as the game board is sturdier and the spinner works better.
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A great introduction to basic strategy games is the ever popular Connect 4. I played this game a lot as a kid, it was fun and fairly quick but it taught some important lessons on strategy. Do you go for the win and leave yourself possibly exposed? It’s all a balancing act and Connect 4 does it well. The original game pieces (not so much the knock offs or travel versions) have textures around the edges that make them easier to pick up for kids with fine motor issues. The game is a little noisy, especially at game end when all the plastic pieces are released but playing on a placemat or tablecloth dampens the sound considerably.

My all time favourite games to start with though, are Co-operative games. There are dozens of games to choose from, so you can pick one that works with the interests of the child. They all have one thing in common – all players work as a team to win the game. This is great for two reasons. Firstly, it eliminates some of the competitiveness of the game and helps kids focus on playing together instead of as opponents. Secondly, it helps encourage good turn taking skills because what other players do on their turn directly impacts your turn so there is incentive to pay attention even when it is not your turn to move. As an added bonus, many of these games teach extra skills – Harvest Time, for example teaches kids about the seasons and how crops grow through spring and summer and are harvested in fall before winter. These games are geared towards everybody winning, but be aware that everybody can lose as well. When that happens, I usually start a discussion about what we might have done differently to win the game and then test out the theory by re-playing the game. (The answer to “what could we have done differently to win the game?” is always “helped each other more” – another nice feature of the games.) The Co-operative games are great because they engage the kids but aren’t so annoying that adults don’t want to play them repeatedly.

As a rule, I stay away from games like Perfection because when the timer goes off and the pieces are launched, it can be loud and frightening for some kids, also some of the pieces go flying and are hard to find! Hungry Hungry Hippos is very fast paced which is good, but it’s also really noisy with all the marbles on the plastic tray, which can be really hard on some sensory kiddos. The family favourite game Uno comes in many variants so you can pick a character variant that your kid is into. For beginners, there are different character editions of My First Uno, such as which feature larger cards and pictures to help with pattern recognition (for example, all 6s have the same character on them so the players can match the numbers OR the pictures). There are less cards so the deck has to be shuffled more with the My First Uno games, but they’re a good introduction to the game. My only warning with Uno as a whole, is that if you’re just introducing turn taking games, hold off on this one awhile. The reverse direction cards can throw newly minted turn takers for a loop. The skip a turn feature can also lead to some crankiness so it’s better to wait a bit before introducing Uno.

For older kids who love to find patterns, you can’t beat the classic card game Set. Set was one of my favourite indoor recess games, and I own a copy now and still love playing it. To create a ‘set’, a player must locate three cards in which each of the four features is either all the same on each card or all different on each card, when looked at individually. The four features are, symbol (oval, squiggle or diamond), color (red, purple or green), number (one, two or three) or shading (solid, striped or open). You can play the game on your own, in turns, or competitively which makes it a great game to grow on. I usually recommend it for ages 10 and up but have played with younger kids who can understand the rules of how to make a set, and have enough of a tolerance for frustration that they can spend the time needed to look for the set in the cards laid out.

These are my top go-to games when I’m working on turn taking or just enjoying the social aspect of games. I tend to stay away from noisy games, games that need batteries, and games with long turn times until the habit of gaming is firmly established. I don’t have any games specifically made for people with ASD, such as ones that directly teach social skills, mostly because I don’t think you always need to get specialized equipment, and it’s good to expose kids to games they may see in the classroom or at a friend’s house. Do you have any favourite family games at your house? I’d love to know what they are. I wrote about my favourite games right now in a post here.

April 8, 2015
Why can’t we all just get along?

Why can’t we all just get along?

April 2nd is WAAD – which stands for either World Autism Awareness day or World Autism Acceptance Day depending on who you ask. My Facebook, Twitter, and RSS feeds were full of posts saying either “Light it up Blue” or “Don’t Light it up Blue, Walk in Red instead” or “wear rainbows for acceptance”. It seems there is a schism in the Autism community, and I’m here to plant myself firmly on the fence. I fully understand that Autism Speaks (who started the light it up blue campaign) has some very troubling policies / research interests. I do not agree with funding anti-vaccination research (particularly in the past 5 years when the link between vaccines and autism was already scientifically debunked). I strongly dislike how they portray autism as something deserving of our pity, and their characterization of people with autism as miserable or that having a child with autism leaves you living a “life of despair” as Autism Speaks co-founder Suzanne Wright wrote in 2013. It’s not okay that Autism Speaks doesn’t have anyone in the senior leadership of the organization who actually HAS autism. It’s tragic that the organization is so blinded by the negatives of having a child, friend, or loved one with autism that they cannot see some of the positives that autism can bring – such as a different way of looking at the world.

My biggest issue though, is that Autism Speaks sees autism as only a disability that needs to be “cured” instead of a part of what constitutes the identity of someone with autism. They spend a lot of money trying to cure something which, in my humble opinion, does not need to be cured. In my work, I strive to find ways to help the kids I work with live, thrive, and succeed in a world that is sometimes set up against them. I try to empower them to be able to be independent, to ask for help when necessary, and to gain the skills that are needed to be able to live a happy and productive life. I do not attempt to cure anyone. Nor do I think that all ‘autistic’ behaviours are something that need to be eradicated. When I discussed sensory issues in an earlier post, I did so because many sensory issues are a negative experience for the person who is dealing with them. I wanted to bring awareness to some of the sensory issues that people with autism and sensory processing disorder face, and give suggestions that can help those living with sensory issues have one less obstacle in their life.

All of that doesn’t mean I don’t think some good has come out of the awareness campaign that Autism Speaks started. If even one person has chosen to learn more about autism because of the light it up blue campaign, then I think it’s great. To all the people who say “we’ve had 10 years of awareness, people are aware of autism”, I’d like to respectfully disagree. In my experience, many people aren’t aware of autism beyond the word itself. They don’t understand it, and what isn’t understood is feared, or worse, made fun of. Yes, the light it up blue campaign was spearheaded by Autism Speaks and buying the official merchandise does help fund the organization. So I don’t buy the official merchandise. You can be in favour of awareness and acceptance without giving money to Autism Speaks. You can wear blue and not support Autism Speaks. You can choose to wear blue because it has become associated with autism awareness.

Which brings me to the other groups, the “walk in red for autism acceptance” and the “rainbows for acceptance” groups. I love that people want to move from awareness to acceptance. What I dislike, however, is the idea that it has to be one or the other. That you have to pick a side. I understand, acknowledge, and share many of the concerns that the Autism self-advocacy network have with Autism Speaks but I don’t think it is an all or nothing deal. Yes we need to move towards the acceptance of autism as part of the spectrum of neurodiversity. Yes we need to encourage people who haven’t had much contact with people who have autism to reach out and not judge. Yes acceptance is much more than just being aware, it is something you actually have to work at doing. But there is no reason that acceptance and awareness cannot coexist.

On April 2nd I wore a blue shirt with a sticker that said “ask me why I’m wearing blue”. It gave me the chance to talk about autism and raise real awareness about it. I also wore my red running shoes and a rainbow bracelet. Why? Because with all of this infighting in the autism community, I feel that we are losing sight of what really matters. We are spending so much time and energy fighting with each other when we should be a community, and united to fight those who would discriminate against people who have autism. The autism community is strongest when we band together and present a united front instead of multiple voices asking for the same things for different reasons. Let’s stop all the infighting and focus on what really matters – improving the quality of life for those who live with autism and those who care for and about them. If you want to donate your time and / or money, do some research and find a group that aligns with your beliefs – maybe a local chapter of the Autism Association, the Geneva Centre for Autism, or an organization like the Special Olympics. If you know a parent with a child who has autism, a friendly smile or an invite for coffee can go a long way too.

To me, this is what autism awareness and acceptance month is all about. This is my friend’s son Jacob. He loves Spiderman and building towers out of blocks. He likes playing in the ocean. He adores his siblings and dotes on the family cat. He also has autism, and while it does not define him, it does mean that he needs some extra help negotiating the world and that his parents needed some extra support so they they could understand him. Let’s not get so caught up in our own fights that we forget what is really important here: people.

Image courtesy of Paula Collrin

Image courtesy of Paula Collrin

Image courtesy of Paula Collrin

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April 3, 2015
Sensory 102

Sensory 102

Earlier this week, I wrote about the two most common sensory issues that affect children with Autism Spectrum Disorder (ASD) – sensitivity to clothing and to food textures.There are other sensitivities that affect children on the spectrum. Sensory issues can and do affect every sense.

I was remiss in not mentioning oversensitivity to noise in the last post as it is one of the most common sensory issues and affects more than just children on the spectrum. It isn’t just loud or unexpected issues that can cause problems. One of the kids I work with, once told me that the humming of the fluorescent lights in his classroom can make it very hard for him to concentrate. He explained that he always hears the humming and can see the tiny flickers that are almost imperceptible to his neurotypical classmates. The energy he expends trying to tune out these distractions is energy he doesn’t have to use on his schoolwork or on social interactions, and leaves him drained at the end of the day. He had gone through the first 7 years of his school career before anyone thought to ask him if there were any parts of his classroom that made it harder for him to do work. Children with ASD do not typically volunteer extra information even when it is in their best interest to do so and had this question not been asked, the problem of the “noisy lights” as he calls them, would likely have never been addressed. Luckily, he had a very understanding teacher who has brought in some floor lamps and tries to use natural light whenever possible so the “noisy lights” can stay off.

Everyday noises that most of us take for granted and easily tune out such as the humming of the refrigerator or the whirr of the furnace fan can be unwelcome intrusions into the life of a child with sensory issues. Unexpected noises can derail an entire day. Last week I was in a big box store and there was a little guy who was having what I recognized as a sensory overload meltdown. Note: a meltdown may look like a tantrum from the outside but whereas a tantrum usually results from a child not getting his or her way, a meltdown is a child’s uncontrollable response to overwhelming stimuli. His mother was at the end of her rope, so I stepped in and asked if I could help (Yeah, I do this a lot – I hate seeing a child in distress). She agreed so I knelt down and asked the child if it was too loud. He said “yes it is” -we were standing about 4 aisles away from the electronics department where every TV was showing something different and someone had turned some of the volumes up it was too loud even for me. I went off in search of an employee and asked them to please turn down the overall volume and asked if a few of the sets could be turned off and he readily agreed. I went back to my new little friend and explained that next time, he should use his words to tell an adult if it is too noisy. He thanked me, and his mother told me that he had autism and “never talked to anyone outside of family” before talking to me. (I hear that a lot too – I’m not sure why I can get kids to open up but it’s a gift I’m thankful for every day.) For me the noise in the store was irritating, but it wasn’t stopping me from functioning. For a kid with ASD, who is unable to tune out the noise, it becomes all encompassing and they cannot function until the noise is reduced or eliminated. However, it often takes someone asking directly if the situation is a problem as children with ASD don’t usually volunteer that kind of information.

Check volume levels!

Loud and unexpected noises can be a source of distress for a child with ASD. To begin with, as a group, children with ASD do not tolerate the unexpected well. Routine helps them make sense of their world, so unexpected noises that disrupt that routine are upsetting. Fire drills, car alarms, doorbells, and even phone calls are all noises that can interrupt and disrupt the daily routine. Sometimes there is an easy fix – one of the children I work with was constantly upset by the doorbell. His parents changed the standard doorbell for one of the ones with a customizable chime – and allowed him input of what the sound should be. He chose one that was quieter but still loud enough to be heard and the problem was solved. Sometimes it takes a lot of trial and error to discover the problem and to figure out a solution, be persistent and you will be rewarded. My friend Lisa notes that children who have sensory issues with loud noises often do not have issues being noisy themselves. This can be due in part to the fact that they don’t hear themselves at the same volume others do or are unable to successfully modulate their voices to the situation. However their own excess noise can contribute to their overall stress and usually causes siblings or classmates to raise their voices in return which can lead to a meltdown.

Smells are another sensory issue that can affect children with ASD. For some children a scent that others find quite pleasant can be quite upsetting. One child I know has an intense reaction to the smell of vanilla. He dislikes it greatly and will cry inconsolably if he catches the scent in a store. He was out with his parents running errands and a bottle of vanilla had been broken in the aisle of the grocery store. He was so distraught that he had to leave the store in order to calm down. For a child with sensory issues, sometimes the only recourse is to remove them from the situation. Some scents can be avoided, and others can be gradually introduced in order to desensitize the child to them. It may be worth investigating, if a child has a negative reaction to a friend or relative, whether they have a signature scent. Sometimes the familiar scent of a relative is not comforting to a child with ASD. Unscented laundry detergents and soaps can go a long way to making life more comfortable for a child with olfactory sensory issues. Beware of cleaning agents with strong or even unusual scents – if your child is showing signs of distress after the house has been cleaned, ask them if the smells bother them. It may be that the smells of the cleaning agents are bothering them.

An often neglected sense when discussing sensory issues is sight. Conventional wisdom has had nurseries, bedrooms, and classrooms brightly decorated with lots of stimulation for developing minds. Some children, however, including those on the autism spectrum, cannot process that much visual input and thus become overstimulated in such environments. This is not to say that there cannot be decoration but make sure the child is not having to filter out unnecessary visual information to get to the important stuff. Daily schedules should be free from extra adornments, and fonts should be simple and not overly ornate. Even classroom bulletin boards should be free of extraneous information. A couple of posters on a bedroom wall may be too much for one child but may be fine for another – see what works best for the individual child.

Not all sensory issues are easy to identify. It can take a lot of trial and error to find the right combination to work for each child. The rewards can be worth all the effort though. When a child with autism is comfortable in his surroundings, and not being overstimulated, they are better able to cope with their world, and live in ours.

March 18, 2015
Sensory 101

Sensory 101

One of the hardest things for many parents to understand about their child with Autism is their sensory issues. I’m writing from my experience, which is with kids who have ASD. Sensory issues can come on their own, as part of Sensory Processing Disorder, or with another condition such as ADHD.

If you don’t have a sensory issue, it can be very hard to understand why you child is refusing to put on the shirt grandma gave him for Christmas because it “doesn’t feel right”. Often, parents chalk these tantrums up to behaviour or defiance, but as I explained in an earlier post, behaviour is how some children with ASD communicate that there is a problem. I have some sensory issues myself, but I also have the words to be able to explain why something is bothering me. I primarily have issues with fabrics, foods, and some sounds, so I’ve got it easy. As an adult, I am able to avoid most of the things that drive me crazy, and as a child I was lucky to have parents who cared only that I was wearing clothes but didn’t care if i wouldn’t wear corduroy, or would only wear corduroy.

Many parents try to make mornings less of a hassle by picking out (or having their children pick out) clothes the night before. While it is a good idea in theory, it can fail horribly in practice for a sensory kid (or grownup) because sometimes something that didn’t bother them yesterday does today. They aren’t being intentionally difficult; they really cannot handle the stimulation those clothes provide on that day. It should be noted, too, that in teens and adults hormones and hormone fluctuations can affect sensitivities so they literally can change day to day.

The seams on clothing can be a constant irritant. Sometimes I am able to filter it out and ignore it but sometimes it’s like a sunburn – my skin feels different and wrong and I can’t concentrate on anything until the situation is fixed. I need to change clothes. I have pairs of diabetic socks because they don’t have rough seams and they are non binding – the elastic at the top of socks is awful. The fabrics themselves may rub the wrong way – and which fabrics bother me may change. I lived in jeans in high school – I had 4 or 5 pairs and wore them more days than not. Then I got to university and couldn’t stand the way denim felt on me. My favourite jeans sat neglected in my closet until partway through 4th year when suddenly, denim was okay again. Clothes that haven’t had fabric softener (I use bounce unscented sheets because I’m allergic to a lot of scents and I am a static magnet) drive me around the bend. They are stiff and scratchy and if I have to wear them, I may look like I’m listening but really I’m just counting the hours until I can change.

Nope. Just Nope.

Flip Flops. Oh my god. I have tried to get into the spirit of summer and don flip flops at the cottage. My record so far is 6 minutes before they were ripped off my feet and tossed aside. The only thing that goes through my head the entire time I am wearing flip flops is “There is something between my toes. Why is there something between my toes? The something between my toes must go away” On a constant loop. I cannot carry on a conversation in flip flops, I can barely remember my name because I cannot tune out the sensory input coming from the little piece of plastic between my toes. Then there’s the characteristic sound that flip flops make. It’s distracting enough when it comes from other people, but when I’m the one making it? I’d stand still except then I still have something between my toes. I can avoid flip flops but many kids with sensory issues have that level of input coming from everything they wear. Yes some clothes are worse than others, and over time, one can can learn to tune out some of the input but when it’s coming from everything all of the time? It requires a tremendous amount of energy to do anything after tuning out the sensory distractions.

There are clothing manufacturers out there who make clothes specifically for children and adults with Autism or Sensory Processing Disorder. They feature flat seams that are far less irritating than regular seams, some seamless designs. printed on labels, and soft fabrics. They are expensive but can be a lifesaver if your child is really struggling. Some regular clothing stores incorporate some sensory friendly elements in their clothing – Joe Fresh has some clothes with printed labels instead of tags and flat seams. I love Smartknit socks – not only are they seamless but they have no heels so they are easy to put on and fit growing feet for longer. They also make seamless underwear and undershirts.

With food, it often isn’t the taste that I cannot handle (though occasionally it is – the taste / smell of root beer drives me crazy) but the texture. Certain food textures are more upsetting than others. I am well aware of how awesome chia seeds are for your health. I can totally appreciate that adding them to chocolate pudding makes it somewhat healthier, but I cannot handle the texture of chia seeds. You can lie to me and tell me it’s plain pudding but it’s not a preference thing, I will feel the jelly-like seeds on my tongue and, because I was raised to be polite, I will swallow one bite and politely refuse any more. Many kids can’t force themselves to swallow it. I do not advocate trying to trick children with sensory issues into eating foods they dislike because they will know, and then they will be suspicious of any new food. There are therapies, usually provided by an Occupational Therapist, specifically designed to help children whose sensitivity to food texture prevents them from being able to eat a healthy diet, but the majority of sensory kids have texture families they cannot stand but are fine with others.

This doesn’t mean you shouldn’t introduce new foods, but don’t insist on a child with sensory issues swallowing the new food. If you can, ask them why they don’t like it. Tastes can take time to develop, sometimes it takes a number of reintroductions before one acquires the taste for something. Textures, are another story – aversions to textures are unlikely to change as a result of repeated introductions. That’s not to say they can’t change, but it’s more of an internal change and not something that can be forced.

Another food texture issue that is common is a refusal to try a food in an altered state. Apples may be a favourite food, but apple crisp makes crunchy apples soft and that isn’t right. Toasting marshmallows gives the outside a crunchy texture when marshmallows are supposed to be soft. A child may like mashed potatoes but refuse to eat baked potatoes because the texture isn’t what they expect. Different textures can mean that even if a child likes the food, they cannot tolerate the altered state. Smoothies can be a tricky sensory combination as some fruits like strawberries have tiny seeds that don’t get fully blended. Smoothies are also a combination of flavours and many kids (and adults) on the spectrum do not like flavours to mix.

Figuring out what the sensory issue is can be a bit like solving a mystery. If a child is non verbal, it can be harder to identify the cause of the problem but not impossible. You basically need to approach the situation like a detective – is anything new? If so, try reverting back and see if the behaviour stops. Are there irritating tags? Take them out (use a seam ripper if possible since the stubs left from cutting can be worse than the tag itself). Is their skin dry? Did you change detergents? Any of these can be the cause. If the child can nod or give yes / no answers you can ask “is this bothering you” as you hold up different items of clothing. If a food was presented in an altered state (such as soft boiled eggs instead of scrambled), try introducing the food in the expected state and see if the child accepts it.

A child who cannot handle wearing certain clothes, or deal with food textures may react in a way that looks like he is an overindulged brat. Friends and relatives will tell parents that they are spoiling the child by letting them get away with reacting. There is nothing further from the truth. We want to set children up for success. A child is more likely to succeed when they are not being distracted by scratchy clothes and they have been fueled with food that they enjoy and that gives them adequate nutrition. With a better understanding of sensory issues, it becomes easier to see how what looks like a tantrum is actually a cry for assistance.

March 15, 2015
The Walls Have Ears…

The Walls Have Ears…

One of the things that brings me joy is my work with children and teens who have Autism or Autism Spectrum Disorder (ASD). When I tell people that I tutor and coach people with ASD I often get quizzical looks or outright questions of why I would want to do something like that.

I often get asked “How do you deal with the behaviours?”. The same way I would deal with the behaviours in a child without ASD. I look for the cause. Behaviours are not the problem – they are the symptom of a problem. The child who cannot sit still is not fidgeting because they want to be disruptive, they are fidgeting because something is making them uncomfortable and they don’t have another way to express it. One of the most common symptoms of ASD is a delay or difference in communication. Some children with ASD never speak, some will talk your ear off about their favourite topic but be unable to answer questions about their day or make casual conversation. If a child with ASD is exhibiting a behaviour such as crying, screaming, or pulling at their clothing, I try to figure out what is causing them to be upset. Something isn’t right in their world and they are trying to communicate that with me. Often the behaviours will disappear when the root cause is dealt with. That’s not to say I don’t get frustrated. When you’ve been bitten for the fourth time in 30 minutes by a 10 year old with a very strong jaw, you can lose a little perspective, but I try to remember to detach myself and attempt to figure out what the behaviour is telling me.

There is a misconception that people with ASD are not capapble of expressing love, or any emotion, or that they are locked inside their own world and refuse to come out. In my 8 years of experience working with numerous children on the spectrum, I have never found a child who can’t or won’t express love or gratitude or happiness. Some express it in ways that are different from what you would expect from a neurotypical child but it is still a valid expression of emotion. I have had some of the best, warmest, hugs from kids with ASD so no, not all kids with ASD are incapable of showing emotion.

And sometimes, they break your heart. Recently, I was doing a tutoring session with a boy who has Autism. We were talking about different ways to solve a math problem, and why it’s good to have more than one way of doing something. All of a sudden, he turned to me and said “I don’t think like other people. I wish I did, so they wouldn’t think I’m dumb”. My heart just ached. It turns out he’s been having issues in school that his parents, EA, the teacher, and I missed. He has had a few group projects lately and there have been some tensions in the group (as there are with all group projects) that have been made worse by him underreacting or overreacting to a situation. The situations have been dealt with but the perceptions of his classmates have been altered. Some think he is weird. Some think he is loud. At least one of them thinks he is dumb. How do I know this? Because this sweet, wonderful boy overheard some of his classmates talking about him at recess. He is very quiet when he wants to be, and has learned the art of blending into the background in order to disappear when he is stressed out. He tells me he was sitting beside the stairs to a portable at recess and overheard some of his classmates complaining about being “stuck” in a group with him – they went on to say that he has “crazy ideas”, and “doesn’t help in the right way” (what IS the right way? Isn’t all help good?) and “must be stupid since he doesn’t talk much”. I asked him when this conversation took place – over a month ago. He has been carrying this around for the last month, afraid to give voice to it lest another person agree with his classmates.

I pushed aside the math homework, we had a chat about how differences in thinking are what make the world a better place to live in, how some of the greatest minds in history have been people who think differently, and about how what we see and hear is not the only truth. I explained that his classmates were wrong about him, and that they were wrong to talk about him (or anyone) behind his back. We discussed how he could handle a similar incident in the future. We made a plan. I wrote a note for his EA and teacher, letting him read it before I printed it off, and he and I had a talk with his mom so that all of his support team were on the same page. He doesn’t want anyone to talk to the classmates in question, and I can’t really blame him for that. He’s feeling better about himself and his teacher and EA are going to talk to the whole class about ways to make everyone feel welcome and why saying mean things isn’t okay even if you don’t think the person is there to hear it. He’s also going to take on a specific role in future group projects – he likes to listen and is good at taking notes so he suggested that he would make a good recorder. This gives him a specific task that he can excel at which should help his self esteem and help his classmates see his strengths instead of his challenges. I hope the strategy works and I’m honoured that he felt safe enough with me to tell me of his heartache. I know I can’t protect the kids I work with from having their feelings hurt, but that doesn’t mean I don’t wish I could.

March 12, 2015