How Do I Teach My Child to Advocate for Themselves?

 

One of the hardest (and most rewarding) things for a parent is watching your child brave new situations alone.

Without you by their side, it can be challenging for them to learn to advocate for themselves.  Some children come more naturally to these skills, but many have to learn them slowly and systematically through experience.  It can be the difference, however, of sitting and staring blankly at a test with no solution in sight, or raising a hand and asking a teacher to clarify a question. 

Self-advocacy can mean that your child writes an assignment down completely and then checks in with the teacher at the end of class to make sure all the assignments are copied correctly. It can help them take control of any struggles they may face, accept their learning challenges, and find ways to navigate their school experience.

 

Below is a quick list of ways to work on self-advocacy with your child. As I discuss self-advocacy with my students, I always follow up with the benefits of looking out for yourself.  That being better organized and on-top of our assignments and tests is a win-win situation.  By taking control of our needs and becoming more efficient with our time, we condense the time we have to spend on homework and other tasks, opening up more time for free time and play.

• Work with your child’s teacher. Sure, all our teachers are busy, but they want what’s best for your child.  If your child needs a more structured system, work with them on ways to achieve it.
• Role play. I can’t say enough about rehearsing possible situations that may arise in the comfort of your own home, while your child is relaxed.  Make it a priority to discuss with them different ways we can ask for help when confused or upset.
• Practice.  Self-advocacy at school can be practiced early on, when you are present.  Have a question in pre-k or kindergarten about what snack to bring?  Encourage your child to ask their teacher for help, with you behind them. Let them be their own advocate.
• Encourage your child to be specific. Requesting additional time on a test to work through problems is more specific and focused (and an easier thing for a teacher to allow) than just saying “I don’t know” or leaving answers blank. I’ve met many children who get test anxiety and draw a blank, leaving answers empty and throwing in the towel. Many children don’t do well with timed assignments, and most teachers are willing to work with them for a solution. After all, they’d often rather test knowledge than speed (exceptions might be fluency tests and state-mandated testing). But it’s helpful for a teacher to know specifically how to help, with extra time for assignments, more clarification for long division, or a book on tape so a child can listen and read. Your child can practice with their teacher on how to answer parts of questions, skip questions and come back, and maintain a rhythm through testing.After all, a child who self-advocates becomes a college student or young adult who can independently navigate the complexities of adult life.  Just this morning I worked on my own self-advocacy (and self-control) skills calling Comcast for the 4th time in two weeks about incorrect billing charges! 😉

Self-advocacy means independence and confidence, and allows your child to feel in control of their academic success.  It’s that peace of mind that is essential, as self-confidence can make all the difference in school achievement.

 

Running on Highways

 

This past weekend I joined a group of moms from Southern California to run a 205-mile relay from San Francisco to Napa, California. The promise of wine-tasting and 48 hours of family-free time was enough to get me to agree to something so crazy.  Our team name was R.I.O.T. Moms, with the acronym for “Running Is Our Therapy” a fitting description for how exercise and outdoor time can rejuvenate even the weariest of parents.

The past couple of months have reaffirmed my own parenting journey. My husband and I sold our house in the Pacific Northwest, closed up shop on our jobs, and headed south with kids and dog in tow to relocate to the San Francisco Bay Area.  The promise of good weather and time to focus on family was all we needed to make the jump to a new adventure. Throughout this transition, which included my oldest starting kindergarten, my kids have been relying on each other and my husband and I in new ways.  Amidst the uncertainty they often look to mom and dad for stability, and that trust can be both reassuring and draining.  I’ve been practicing some meditation techniques, channeling my inner calm, so when the chaos threatens to take over – one child is crying, another is telling a loud story, the dog is barking, the dinner on the stove boiling over – I can take a deep breath and keep my core calm and regulated.

 

Children feed off our nerves. A child who easily becomes dysregulated is looking for outside sources of strength to bump up against.  Sometimes, this is figurative – needing a calm presence to reflect back to them the way to cope with a situation.  And sometimes they actually ARE bumping into things – crashing into you, into their sibling, hitting walls, or tripping over their own feet – to seek some sort of barrier or boundary to the chaos coursing through them.  How we react – kneeling down, modeling deep breaths and quiet words, giving hugs and pressure squeezes when needed, reflecting their emotions with words and simple phrases – can mean continued shouting and tears, or a de-escalation of the situation.

 

Running a relay takes you on beautiful trails through the woods, winding streets coursing through quaint little towns, and hot, gravely highways with semi-trucks roaring past. I have a hard time on those highways, thinking I have little shoulder to run on, my footing irregular and my temperature rising.  The sound from the trucks can be overwhelming, moving me to frustrated tears if I let it. A dysregulated child feels the same.  Senses on overload, fear of the unknown driving action, uncertainty of how to proceed. For many of our children, being unable to get the train pieces to fit together, or an incessantly itchy tag bothering their neck, is all that is needed to get on that chaotic highway.

 

I worked on my meditation techniques during those miles. The face of calm on the inside.  Ironic, since I probably looked a hot mess on the outside.  Breathing, keeping my blood pressure at a steady state.  Visualizing my end goal and the steps to get there.  Using my thoughts and words to channel chaotic emotions.  These all mirror many of the strategies we use with children to help them regulate their bodies. Self-soothing strategies are lifelong lessons we can teach, to deal with frustration, chaos, and situations outside of our control.  Check out more links below to strategies you can use at home…

Avoiding Meltdowns

Self-Soothing Strategies

Behavior Strategies

Anxiety Management

And a big “thank you” to my fellow RIOT Moms, who persevered with me!  205 miles ain’t got nothing on us!

Pack Your Bags!

Traveling with the kiddos…

 

I think as parents we build up our nervous anticipation of traveling with kids.  Usually, trips go more smoothly than we predict they will, and the (sometimes literal) gross disasters are fodder for years of family stories to come.

 

And what better way to educate our children than to travel?  For it is through travel that we see new sights and sounds, eat new foods, experience new cultures, and push our comfort level.  Our children learn to occupy themselves when bored, become comfortable with their own thoughts and imagination, and communicate with others in a whole new way.

 

Travel can be as simple as a road trip around your state.  Each town has a unique personality to meet along the way.  An airplane flight to a neighboring state to visit grandparents teaches children how to wait patiently, how to follow oral directions, how to read signs and posters, and how to find gate numbers.  What better way to get hands-on learning?

 

Your children experience new people with all that people-watching: new mannerisms, new ways of dressing, and overhear conversations on novel topics.  What could be a better “classroom” lesson for the day?

 

When schedules allow, it isn’t hard to get away for a weekend.  I believe prioritizing your child’s education, as we all do, includes these rich experiences.  Patience, flexibility, and fortitude are lessons taught remarkably well on the road.  As parents, we can prepare our children for the journey ahead, knowing full well that hiccups will occur, but they often won’t be something we can’t handle.

 Here are a few things to try on your next adventure:

• Talk with your child about expectations and what the traveling will be like.  Kids do well with a framework on which to map their experiences.

 

• Allow extra time to pull them aside, out of the hustle and bustle, and explain what is happening next.  Before you go through the security gate at an airport, for example, take them aside and kneel down, telling them what to expect in the next few moments.

 

• Help them use their eyes and ears to observe the world around them. Give them a visual scavenger hunt (like “I Spy”) or pictures in their journal to find and draw.  For an upcoming trip, I’m printing photos from the internet and sticking them inside journals.  My daughters will be able to use the pictures to identify important landmarks and historical monuments.  They can color or write their own ideas, too!

 

• If your child has special needs, they will need some accommodations in your plans.  But even our special kids need these experiences.  Plan ahead and bring some fallback comfort items to keep them at ease.  They will respond well to your energy level, so take a deep breath and meet them where they are at.

 

You can find all sorts of great suggestions on the internet for travel-specific tips and tricks for kids.  Use what works for you, discard things that don’t.  But by focusing on the actual travel as a learning experience, you can see the experience through your child’s eyes and focus your attention there. 

Where will your next trip take you? Do you have a great kid-friendly travel experience to share?  Leave a comment below and let us know how you did it!

 

 

*My family and I are heading on a road trip soon to visit a new baby niece.  I’ll take my girls on a plane flight to visit grandparents for spring break, while my husband stays behind.  Our girls have proven themselves good little travelers, other than the occasional baby explosion, so we’ll put them and their potty-trained backsides to the test on an international trip in late spring.  I will let you know how it goes!

Homework Tips and Tricks

*Let me just say this.  I am not a big fan of lots of homework.  I think it is redundant and unnecessary for many students, and for others can completely strangle their love of learning.  I think there is a time and place for completing an assignment that couldn’t be completed during the day, or working extra on a long-term project.  But I think our education system in general has gone the wrong way with homework.  Struggling students can spend three hours a day in early elementary school tackling their homework, and their systems are already fatigued from a full day of school.  It is not unusual for the middle school students I work with to spend five hours in the evening completing homework.

That being said, I encourage parents to help their children find a balance. Encourage  quality over quantity, and keep in close communication with teachers to determine what is necessary for your child.  Good teachers understand this balance, and while they can’t change what’s required on state testing, they are usually very willing to work with a student on a bit of balance.

 

After a long school day, it can be difficult for children to sit down and tackle their homework.  Make sure they have eaten a snack and exercised outside, and then use an analogue clock or a Time Timer to allow for short bursts of homework activity.  For early elementary students, try 10-20 minute work sessions; for older students, try 20-30 minute work sessions.  (I always recommend analogue clocks rather than digital clocks to help your student understand the passing of time, rather than just a single moment in time.) The Time Timer is helpful because it shows a countdown of time in bold red, so even preschool students are aware of time passing.

 

Is your child having trouble sitting in one place for homework?  Make sure they have exercised after coming home.  Then, try a wiggle cushion on their seat, let them stand at the kitchen counter, or sit on an exercise ball.  After holding it together all day at school, their little systems may be fatigued, and sitting still in one place too challenging. 

 

 

 

Decide what the goal of the assignment is.  Posture and core strength are necessary for good handwriting.  If the focus of the assignment is good handwriting, make sure both feet are solidly on the floor, they are sitting upright, and using their non-dominant hand to hold their paper in place.

 

 

If the focus of the assignment is language, ideas, creativity, allow for some body wiggling and poorer handwriting.  Many of my students stand, rock back and forth, and use a wiggle cushion for tactile and vestibular feedback.  I can tell they are focused and attentive when their body is moving and they are helping to regulate their engagement. As we analyze the task, brainstorm and organize ideas, and get a preliminary essay completed, the focus is on their language and the ideas they are generating.  We can go back later and clean up the handwriting during the editing phase of the writing process.

 

Homework taps into the executive function skills your child is developing.  For a child who has worked hard holding it together all day at school, this can be a very challenging process.  Focus on completing a few tasks well and enjoy the time you spend with your child.  Allow them to share their work with pride, and encourage them as they progress.

What are some homework tips that have worked with your child? Please share.

Raising a “Quirky” Child

5 Tips for Raising a Quirky Child

While we want to celebrate what makes each child unique, there are times when we see our children standing out from the crowd and we worry they are standing alone. Our hearts ache when we see our children left out of play, gossiped about, or ostracized from the group because of the little quirks that make their personality their own.

As a parent, there is a fine balance between allowing our little quirky child to brave his own path, and helping him learn and understand the way people interact, why they act a certain way, and how we may better “fit in” at certain times. This is learning that is ongoing, as our quirky kids will experience new situations throughout their lifetimes. But as parents, we can often be by their side, helping them navigate the nuances of the social world.

1. Practice entering into a conversation or play scenario. Initiating a conversation with another child gets trickier the older your child gets. It’s often hard for a child to come up with a way to enter play. At your child’s level, role play some ways to join a conversation. Hi there… I love Legos, especially Star Wars ones! Can I play, too? Practice together, then let your child practice with another parent or sibling.

2. Be straightforward and matter-of-fact about social rules. After you witness an awkward encounter, talk with your child about appropriate ways of interacting. It’s great to say hello and smile when we see our friends, Aidan. We don’t want to hug or kiss them, though, because we need to respect their space. We save our kisses for Mom and Dad.

3. When you know a tricky situation is coming up, prep your child ahead of time. Give them some strategies on how to interact. It’ll be fun to see your friends on the soccer field, Sarah. Let’s smile and say “hi” when we get there.

4. Problem-solve with your child. From problem behaviors to extreme anxiety, the best solutions usually come from letting your child have their own voice. If they are part of the brainstorming, they will be that much more vested in a solution.

5. Give them a chance to express shyness or anxiety in a loving environment.  Everyone gets stressed or anxious by tricky situations. Let them know that you are there for them and will try to help them if they have a question.

Your child’s quirks may one day reveal themselves to be his strengths and individual glory. Celebrate him, support him, and love him for his gift to the world.

Getting the Environment Right (and focusing on the positive)

 

 “He can’t sit still at school!”  “She always gets annoyed by her brother at home when they are playing!”  So often we want to focus on the problem areas, the situations where our children aren’t meeting our expectations, that we forget to look for clues in the activities and environments where they are excelling. As you work on communication skills with your child, give thought to the environments where they are thriving.

 

I work with children who can hold it together well at school, but unleashed upon the home environment, every bit of self-control seems to fly out the window.  They disobey, push their parent’s buttons, and antagonize their siblings.  Conversely, I also know children who can’t seem to focus at school on their academic work, but stay occupied and focused for an hour building a Lego set with 1000 pieces in their backyard at home.

 

You can find clues in your child’s favorite pastimes.  If they hold it together well at school, look at the structure in place within the school environment.  There is a set schedule, set rules, and announcements which are reviewed every day.  The expectations are consistent, the transitions mostly predictable, and the time for breaks and down time logical.  Some of our most difficult children need the most structure. They need overkill with repetition, transition preparation, and a review of expectations.

If your child is falling apart at school, consider how their learning can tap into the multisensory environment they love at home.  Outside time, physical breaks, sensory reinforcement (like sitting on a wiggle cushion or having a hand-fidget), hands-on learning… all can help refocus and energize their learning.

 

What ideas can you find from the activities your child loves?  Why do they love that karate class?  How about digging in the backyard?  What makes them read for hours in the backyard hammock?  Make a list of everything you can think of that about that environment (“She loves reading fantasy, she can go at her own pace”), and include the sensory components of each (e.g. “it’s sunny and quiet, the hammock rocks back and forth,”etc.)  Then circle the elements of each activity that you could replicate for another, more challenging situation.

 

Need help?  List your child’s favorite activity and environment below, and we’ll come up with some ideas.

Kids Do Well If They Can

Behind every challenging behavior is an unsolved problem and a lagging skill.

Every child demonstrates frustrating behaviors at times.  As they grow and develop, children challenge the world around them, sorting through their own feelings to find an individual voice.  Some children demonstrate mental overload by whining, crying, or withdrawing into themselves.  Others reveal behavior that is more outwardly-focused, such as yelling, shouting, and spitting.

Still for others, a mental switch is flipped, and being unable to process a situation takes them into a “fight or flight” response where they bolt from the situation, lash out physically, hit, punch, or kick.  The problem is, once the switch is flipped, they often don’t have the cognitive capacity to process the situation appropriately.  What’s a parent to do?

Language processing problems, and/or anxiety often lie behind an apparent behavior outburst.  Consider the following list of skills (adapted from Ross Greene’s “Lost at School”) frequently found lagging in challenging kids:

-Difficulty handling transitions, shifting from one mind-set or task to another

-Difficulty persisting on challenging or tedious tasks

-Poor sense of time

-Difficulty reflecting on multiple thoughts or ideas simultaneously

-Difficulty maintaining focus

-Difficulty considering the likely outcomes or consequences of actions (impulsive)

-Difficulty considering a range of solutions to a problem

-Difficulty expressing concerns, needs, or thoughts in words

-Difficulty understanding what is being said

-Difficulty managing emotional response to frustration so as to think rationally

-Difficulty attending to and/or accurately interpreting social cues/poor perception of social nuances

 

These skills require quick and flexible thinking.  Most children with behavioral challenges already know that we want them to behave.  They also would like to behave the right way.  What’s lacking are important thinking skills that allow them to regulate their emotions, consider the outcomes of their actions, understand their feelings and those of others, and respond to changes in a plan.  Such flexible thinking skills are challenged when the demands in a situation are more than the child is able to handle adaptively.

They aren’t doing it on purpose.

The kids who are most often described as being manipulative are those least capable of pulling it off.

 

While a clear diagnosis (language processing disorder, attention-deficit disorder, anxiety disorder, etc.) is helpful in pointing us in the right direction, a child is more individual than their own diagnosis.  There are also many children who fall through the cracks in receiving a true diagnosis, meaning they don’t fully qualify for all the conditions of that disorder.  But you don’t need a diagnosis to have a problem.  You just need a problem to have a problem.

The situations which are most challenging for our children vary depending on the strength and development of their organizational and flexible thinking skills.  The challenge for parents and professionals is to break down situations where these behavior outbursts are occurring and develop strategies, in collaboration with the child, for better behavior.  It is also important to truly address lagging skills in processing and flexible thinking in order to fill the holes a in a child’s development.  Children who experience the most success with behavior modifications are those who are considered an integral part of the team, who are asked for their insight, who problem-solve with their parents and teachers, and who are asked for their opinions every step of the way.

For more information on collaborative problem-solving, check out Dr. Ross Greene “The Explosive Child”

 

Wait, did you say I can still use Facebook??

I mentioned that I would follow-up my post on SCREEN TIME for younger kids with some ideas and suggestions for healthy screen time for older students. To sum up my previous post, I encouraged you to keep children under 2 away from all screens, to look at decreasing or eliminating screen time for preschool and kindergarten children, and to structure limited viewing for school-age children.  Be honest with yourself about how much screen time your child is actually having every day.  The ability to play by oneself and occupy oneself with imaginative thoughts is a learned skill.  Children need practice and time to be able to form that skill.

While even my 1-year-old seems to intuitively know how to turn on, swipe and unlock an iPhone (no, I don’t let her play with it… she just has grabby little hands), that “tech knowledge” does not translate into an understanding of how an iPhone actually works.  In the “olden days” a child could figure out how to build a radio by taking apart and rebuilding the gadgets inside.  But an iPhone, computer, or television is now so complex that even programming one is difficult for the brightest high school students.

You can find support for nearly any view on the internet, but when I look at language and social skill development with my SLP lens, I’m identifying circles of communication.  A message produced, sent, and received, followed by the recipient producing and sending his own message.  Email falls into this category, as does text or instant messaging if received the correct way.  (Many of my students struggle with innuendo, sarcasm, and humor, which are often lost in an email or text, however.)

When we look at how to incorporate screen time into an older child’s life, we can first looks at PDAs and online homework.  Those two systems should be used as a backup system for a planner and binder with in-class notetaking on assignments.  Many schools use Edline of PowerSchool as online systems, or a similar system.  In my experience, teachers often forget to update their online schedules, don’t add valuable information, or are unavailable to respond to after-hours emails regarding assignments.  A middle- or high-school student needs to know how to record their own information in class, asking questions as needed while they are still face-to-face with the teacher.

At home, having a designated place to charge and keep the cell phone can be vital for homework efficiency for a student.  I often tell my students that if they keep their phone off, Facebook logged out, and computer powered down, they will be much more efficient at completing their homework.  As a result, they will free up “down time” after the work is through to play video games or check their Facebook.  I have one student who has decreased his homework time from 6 hours every night, down to 2 hours every night by staying off the computer.  (He’ll get on at the end of his two hours if he needs to type something.) He LOVES the extra time he has for free time after his homework is finished.  It’s a win-win situation for him.

My thoughts on video games for middle and high school kids?  If they enjoy playing in their down time, let them.  Wait, what??? For a child who is going through the tumultuous process of growing-up-with-hormones-racing and the insecurities that come with that growth, video games are often their only platform for controlling their own destiny.  There should be a few guidelines, however, that parents follow.

1. Set a certain amount of time on screen time “down time”
2. Encourage other “down time” in the absence of screens where your child can be alone in their thoughts
3. Don’t forget about exercise and outside time!
4. If your child struggles with social skills, beware of the tendency to retreat into video games.  Make sure they are involved in at least one extracurricular that encourages them to be social.

I’m actually a big fan of Facebook and other social media, especially when used well.  Studies have found that the more social a child is, the more frequently they reach out to others through social media.  For a child with limited social skills, great.  For the social child with ADD/ADHD, not so great if they haven’t completed their “to-do” list.  Sit down with your child and decide what the boundaries are.

I often recommend that parents provide a lot of structure around these outlets, at least initially.  Bullying and inappropriate contact can occur, and it is wise to be cautious of your child’s independent use of media.  Placing the family computer and the cell phones in a central place can help you keep tabs of your child’s internet surfing.  A child who can effectively navigate social media gains a confidence and expertise in social relationships needed for school and the workplace.  As parents we can teach them how to let it add value to their lives, rather than taking away from real-life experiences, friendships, and holistic health.

Anger… and Maintaining R-E-S-P-E-C-T

I’ve been working with several students on their anger outbursts and how to regulate their intense feelings.  Then I happened on THIS from Ahaparenting.com about how parents fight in front of their kids has a neurological effect on their children.  The strength and ferocity of the argument can cause a child’s stress hormone levels to escalate, which takes some time to diminish after an argument (this flight-or-flight stress response.)  A few tips for managing anger and keeping it from turning into a full-blown argument, from Dr. Laura Markham:

“Is it ever okay for parents to disagree in front of kids?  Doesn’t it model the resilience of relationships, and how to repair them?  Yes, if you can avoid getting triggered and letting your disagreement disintegrate into yelling or fighting.  For instance:

1. One parent snaps at the other, then immediately course corrects: “I’m so sorry – I’m just feeling stressed – can we try that over? What I meant to say was…” Kids learn from this modeling that anyone can get angry, but that we can take responsibility for our own emotions, apologize, and re-connect.

2. Parents work through a difference of opinion without getting triggered and raising their voices. For instance, if you and your partner have a good-natured discussion about whether to buy a new car, your child learns that humans who live together can have different opinions, listen to each other, and work toward a win/win decision – all respectfully and with affection. Having these kinds of discussions in front of kids is terrific, as long as you agree to postpone the conversation if one of you gets triggered and it becomes an argument.

3. Parents notice that they have a conflict brewing and agree to discuss it later. Hopefully, this happens before there’s any yelling — or you’ll be modeling yelling! And hopefully, you can close the interaction with a big, public, hug. If you’re too mad, take some space to calm down and then prioritize the hug in front of your child, with some little mantra like “It’s okay to get mad….We always make up.” This takes some maturity, but it models self-regulation and repair.”

When we teach our children and students how to handle their emotions, we want to make sure we are providing an appropriate model to back it up.  It is healthy to express emotions and not keep them bottled up inside, but we need to show our children a productive way to handle that anger.  An angry child can turn that passion into a quest to change to world, with the right guidance and structure.

For tips on teaching your child to self-soothe, read my previous post here about essential tips for self-soothing.

Latest News on Autism

I thought this post (copied below) was an interesting reflection from parents in the trenches. Lately, there have been several new studies examining causes and correlations of autism, including the link between air pollution and autism. For a parent of a child with autism, this can be equally promising and exhausting, and doesn’t take away from the day-to-day challenges and wonders of parenting a child with special needs.

Quoted from The Guardian:
Last week, Kristina Chew wrote about how she’s struggled with whether it’s right to support the medical community’s efforts to find a cure for autism. We opened up the issues raised Kristina’s piece to Guardian readers, and asked parents of autistic children to weigh in on what finding a cure means to them. Nearly 200 parents wrote in with their thoughts and we’ve published ten responses below.

Jane Daniel, London: ‘I’ll take the cure, please’

At diagnosis, the paediatrician said, “I’m afraid it’s autism,” and gave me a leaflet from the National Autistic Society. This pretty much set the tone for our experience with physicians: generally woefully ignorant, and not interested in investigating beyond the diagnosis. The lazy Rain Man references are as insulting as they are dull. Why on earth wouldn’t you want to find a cure? There is no hope that my son will ever be able to live independently, and I’m terrified at the prospect of what will happen when I’m no longer around to advocate for him. I’ll take the cure, please.

Miriam Cotton, Ireland: ‘The concept of a cure is offensive’

My doctors accept my son’s condition and don’t speak of it as something that can be cured. The concept of a “cure” for autism is as offensive as wanting to cure Down’s syndrome. There are therapies and supports that can substantially help the person to mitigate the symptoms of their condition – to develop strategies for living with it optimally – but the condition is there for life. Early diagnosis and help improve a person’s capacity for independent living exponentially. It’s the same for ever disability, of course, and yet our governments steadfastly refuse to confront this fact.

Dave Korpi, Oregon, US: ‘I would love a remedy as much as a cure’

I don’t feel like autism is as much of a stigma as it used to be. On the other hand, the US media sends mixed messages about why autism rates are rising; the CDC attributes it to better diagnostics, which is laughable. I would love to have a remedy that would lessen the intensity of the symptoms, as much as a cure. My son is brilliant in some areas, infantile in others, and non-verbal. Trying to develop independent living skills is woefully not enough, but it’s better than no strategy, or warehousing, which is still commonplace.

Gordon Darroch, Scotland: ‘The idea of a cure is meaningless’

The doctor has had very little input into the lives of either of my two autistic children, mainly because they aren’t taking medication. Speech and language therapists, educational psychologists, child psychologists, paediatricians, schoolteachers, music therapists, respite care workers and social workers have got most of the bases covered. I find the idea of a cure meaningless. I want my children to acquire skills that let them get on in life and become happy, sociable, thoughtful, considerate people, but they’ll always be autistic. If I’d been able to prevent them being born with autism I would have done so, but dwelling on that notion is just denying the reality of the situation they’re in. They need practical help and therapeutic support now, not the dubious benefits of a miracle pill at some point in the future.

Leila Couceiro, California, US: ‘I still have hope’

The researcher who works on new medications is not the same person who will think about smarter ways to include and support the adult autistic population. My child is only nine years old, so I still have hope that a new drug to lessen his symptoms will be discovered in his lifetime. And at the same time, not a day goes by without my worrying about his adulthood after I’m no longer alive and able to make sure he’s safe.

Rob Gentles, Ottawa, Canada: ‘I would jump for joy, but I am doubtful’

For my family, we just need help getting Alex as independent as he can be. I fear for Alex once we are gone. I hope that he will be able to advocate for his own needs. I hope that there will be good people who will help him look after himself. We will do what we can to save money for him now, but we are not rich and we can’t predict the future. I would jump for joy if there were a cure, but I doubt there will be one. Whatever the cause of autism, it has probably been with us for a long time.

Tara Hughes, United Kingdom: ‘There is nothing “wrong” with me’

I’m autistic. I frequently despair at the coverage of autism in the media. I do not “suffer” with autism. I don’t need or want fixing or a cure. Equating autism with cancer is extremely offensive. I don’t need curing. I’m autistic; I have a different operating system that’s all. I’m not “less than” the majority who run on a different distribution. Some things I can do really well, and some things are harder and I might sometimes need help. Reasonable adjustments, anyone? Autism is not an illness. It’s a way of being. It’s the way I am. There’s nothing “wrong” with me.

Sherry Nelson, New Jersey, US: ‘A cure would mean everything to us’

My son is ten. When he was little, it was all about ABA therapy. The hope that he could learn to communicate and function normally was alive and well for a while. A cure would mean everything to our family. Our son is so sweet, happy and loving. But he can’t tell us his most basic needs. He can’t tell us he is hungry, or thirsty or sick. You can get through the day and make sure he eats and drinks enough, but when he is sick, it is so hard. You are guessing half of the time, trying to help him get better. That is when being his mom just breaks my heart.

Yakoub Islam, Greece: ‘We need to maintain the funding’

My son starting taking small doses of Risperidone at age 16 (he’s now 20), to help manage his challenging behaviours, which had become more destructive during his adolescence. The medication was effective, as part of an overall programme of behaviour management. We would never have managed him living at home until he was 19 if I had not trained as a special needs (autism) teacher, shortly after he was diagnosed at three. My concern is that my son’s specialist autism care placement continues to be fully funded. It sickens me that so-called austerity measures are targeting some of our nation’s most vulnerable people.

Michelle, Canada: ‘Support is what we need’

My boys don’t need a cure – they are not diseased. They were born with autism: intervention was needed as early as the first three months of their lives. To “cure” my kids, I’d be wishing my sons would be different kids than they are today. Support is what we need, not the insulting idea that our kids are suffering from a disease.