Moyanova Autism & Family Support

Autism: a mile in someone else's ballet shoes A vivid reflection on overwhelm, processing, and what it can feel like when instructions arrive faster than understanding.

I always thought ballet was for nerds. My mother-in-law, who at 72 still takes ballet lessons, would strongly disagree. She has been trying to convince my husband and I to send at least one of our 3 boys to ballet for several years now. My father, who is an avid sportsman, would be sure to disown me if ever that happened. Fortunately for him though, none of my boys have been interested in ballet, but granny's heart is surely broken every time she invites them to just watch a ballet performance and they refuse. Yes, it's true, ballet has not been my thing, until recently that is.

My oldest son is 13. He does not like ballet. Ballet, however, has given me personal experience into how he and other children with autism view the world. I am a behavioural consultant and I work with children on the autism spectrum. I know the successful strategies needed in supporting children with autism, but I haven't known how it feels. I didn't intend to take this route for a career, but when my son was diagnosed with autism in 2004 I knew I had to find out everything I could about the condition and build on my psychology background. Autism is comprised of three parts: differences in social communication, behaviour, and sensory processing. As a result, people on the autism spectrum experience the world differently from us neurotypicals.

So ballet, yes. I fell down stairs during 2012 and seriously injured my foot: 2 torn ligaments, a broken bone, and a crushed bone. Bring on the wheelchairs, crutches, and sympathetic looks. Now, about a year later, I am still feeling the effects of the injury, especially now with winter knocking on the door and the mornings getting colder. So last year I decided to join a ballet class to speed up my recovery. Starting up ballet at 40 is no joke, but not walking at 60 would be worse. So, off I went.

"Battement frappe" and "battement fondu" sounded like food to my ballet-ignorant ear, but no, those were in fact dance moves. The other real dancers knew exactly what to do, and around the room they confidently whisked. The instructor showed me the routine again. I attempted to copy, fumbling on the wrong foot with my arms all over the place. She proceeded to show me 4 or 5 dance routines, all different from each other. I was totally lost.

In desperation I asked if I could please learn just one routine and get it right rather than 5 routines at once. Kindly she said no, it would come with practice. "Could I just master a few steps, then move onto the rest of the dance sequence?" Again, "No, it would come with practice." My confidence dropped and I felt totally overwhelmed, not to mention embarrassed in front of the others in the class. The thought of my foot not gaining full recovery, however, kept me returning to the lessons.

I experienced how children on the autism spectrum are likely to feel on a regular basis. They usually have slower auditory processing systems than their neurotypical counterparts and have language challenges as well. Battement frappe! Not understanding what is expected of them surely grows frustration and the tendency to withdraw. Certainly I felt this way. They can struggle with large volumes of unfamiliar input given at once and need instructions to be broken down into manageable parts for success. One dance step at a time please.

Without this, confidence drops, as does the desire to keep trying, especially if they don't feel understood. Moving onto something new before a foundation is laid creates a feeling of being overwhelmed and, again, withdrawal beckons. In the school setting, these feelings, along with sensory input such as loud noises and uncomfortable chairs, give us a hint of the challenges children with autism are faced with.

Providing encouragement and motivation by means of praise and positive reinforcement gives children on the autism spectrum the assistance they need to keep trying and boosts confidence. Giving them the tools to tackle a new challenge, even though difficult, also gives them the chance to experience victory and a sense of achievement.

So what has ballet confirmed to me? Well firstly, ballet is a lot harder than it looks, and secondly, taking the time to teach our children with autism according to how they learn can make all the difference in their progress.

Being Autism Aware during lockdown Practical structure, family support, and awareness during disrupted routines.

Being an autism parent brings a life of many unknowns. How will my family react to this diagnosis? Will I find a suitable school for my child? Which approaches are the best? Will my child ever learn to talk? How will I pay for all the interventions? And who will care for my child after I am gone?

Apart from the elusive answers to these significant questions, we also deal with the day-to-day unknowns. How do I comfort my neurotypical daughter when her brother has ripped up her homework again? How am I going to handle the tantrum which will follow when I tell my son he can't have chicken nuggets because they are finished? Will we be able to get through eating out as a family without a meltdown? And how am I going to keep calm when my son's inflexibility is on top form today? I just don't know.

Still, as ASD parents, we try to look on the bright side and keep our minds on the many highlights of having a child with autism: the unique ways of looking at the world, the sharp visual memory skills, the refreshing sense of humour, and the brutal honesty.

Then along came COVID-19.

April is Autism Awareness Month worldwide, and while all of us have had to adjust and find our new normal during lockdown, parents with children with ASD have so much more to consider during this time, especially parents of children with ASD who have strong communication challenges and challenging behaviours.

There is no sleeping in late, just seeing where the day takes us, or carrying on working from home while my child plays all day. No, these are luxuries reserved for neurotypical families. Change is hard for children on the autism spectrum. A break in routine can trigger behaviours and uncertainty can increase anxiety. We also have to consider that most parents of children on the autism spectrum live with high stress levels even when there is no lockdown involved. They too need support.

Here are a few suggestions for parents of children with ASD during lockdown, as well as for friends and family who want to show support to parents of children with ASD.

Tips for lockdown for parents who have children on the autism spectrum

If both parents are at home, divide the day into 2-hour segments. Each parent is responsible for the child for 2 hours at a time, then swap. For children who are less demanding, divide the day into morning and afternoon shifts.
Make a schedule you stick to so your child has structure and order in the day. For example: 6am breakfast, 7am sensory activities, 8am outside play, 9am play in the bath. Schedule activities your child likes at intervals during the day and stick to it every day.
Make a visual representation of your daily schedule so your child knows what will be happening next.
Distinguish between weekdays and weekends and have different activities for each. Schedule breaks during each scenario.
Use a timer so your child knows when one activity is ending and another will begin.
If your child is prone to running away, consider a safe seated activity setup for limited periods, such as using an appropriate car seat attached to a dining room chair while activities are set up at the dining room table.
To break things up, and if your child enjoys being in the car, set up play time in the car, put music on, or drive up and down the driveway.
Take your child on a walk around the garden. Try to engage them in physical activities such as running, jumping, or playing with a ball. When you are back inside and your child is tired, let them watch something on the iPad while you try to get back to work.
Set goals for your child so you have motivation and targets to reach for in terms of specific skills you would like your child to achieve during lockdown.
Use social stories to help explain the many changes which have happened, as well as how to stay safe during lockdown.
Look online for virtual parent support groups you can participate in.
Remember to schedule downtime for yourself, even if it is a cup of coffee. It is ok to have a bad day. This does not mean you are a bad parent.

How to show support to families with ASD during lockdown

Offer a listening ear over the phone to close friends who have children with ASD. ASD is emotionally demanding on parents. Having a safe place to talk about the challenges can be healthy for parents who need to process what they are going through during lockdown.
Keep confidential whatever ASD parents have discussed with you about their child.
Offer to go grocery shopping for single parents of children with ASD.
Ask if the parent would like you to look up resources and activities online for children with ASD. ASD parents do not have much downtime; ASD parenting is very hands on.
Invite them to call you if they need to talk or unload after a difficult day.
ASD is expensive. It comes with many appointments, assessments, specialist visits, and ongoing support. Offer to sponsor a session if this is appropriate.
Mention the positive attributes about the child with ASD. Parents are constantly told what their child cannot do and what the child's limits are. During lockdown parents may feel overwhelmed and tired. Communicating positives can go a long way.
If you have a neighbour who has a child with ASD, consider baking treats or making a meal which you pass over the fence or leave at the door, using safe precautions.
Do not judge neighbours or parents you see from over the fence losing their cool with the kids with ASD. It may be the 12th time today the child has thrown food at a parent. Parents are people too and they have their exhaustion point. Rather send a WhatsApp saying you are thinking of them and asking if they need someone to vent to.
Remember, for families with ASD, autism awareness does not end at the end of April. It is year round.

General information about ASD

Autism spectrum disorder (ASD) is the term given for a developmental condition which affects the following areas:

Social interaction
Communication, verbal and nonverbal
Repetitive behaviours
Sensory processing

Each person with ASD is different. If you have met one person with autism, you have met one person with autism. ASD affects people from all walks of life, all countries, all social classes, and all ethnic backgrounds. Autism occurs more often in boys than in girls. Early support can help improve skills and day-to-day functioning.

Signs of autism before 12 months

Shared by Dr. Annette Nunez, PhD, LMFT, Director of Breakthrough Interventions Denver, USA.

Child does not respond to his or her name when called.
Child does not imitate physical gestures, such as waving, pointing, or smiling.
Child does not imitate sounds.
Child does not babble.
Child does not use gestures to communicate, such as pointing or waving.
Child does not make direct eye contact.
Child does not follow an adult's pointed finger.
Child lacks shared enjoyment.
Child has more interest in objects than people.
Child lacks back-and-forth communication such as sharing sounds, smiles, and other facial gestures.

Additional signs before 24 months

Child does not have any spoken words.
Child does not have meaningful two-word phrases.
Child does not respond to verbal instructions.
Child has limited play skills with toys.
Child plays with toys in unusual ways, such as spinning, sniffing, or licking objects.
Child prefers to play alone or seems aloof.
Child appears disinterested in people or unaware of people around them.
Child lacks imaginative play skills.
Child has repetitive motor movements, such as walking in circles, jumping, or pacing.
Child has an unusual insistence on routine.
Child has sensitivity to external lights and sounds.
Child has extreme emotional outbursts, such as laughing or crying for no apparent reason.

Behavioural support: Debunking the Myths A parent and professional view on progress, independence, and quality support.

Parents of children with Autism Spectrum Disorder (ASD) get a rough deal. The only people who are really on our side are other parents of children with ASD, and even then there are opposing views on how we should help our children. Schools don't want our kids. Just try getting your child with ASD into a government school. Family members often point the finger at you because you seemingly can't discipline your child, and adults with ASD criticise you for trying to get help for your child because they say ASD is part of who your child is and you shouldn't try to change that.

It's a case of picking who you want to offend the least. Any decision you make is going to get someone's back up. The reality is that we as parents and families of children with ASD are also affected by the condition. People who have ASD don't experience it in a vacuum. Its impact is concentric, starting in the middle with the person with ASD. The first shock wave hits the parents, then the siblings, the grandparents, extended family, and friends. On the outer circles are schools, sports clubs, and medical facilities, followed by the general public. The least affected, with the smallest ripples, are the government policies and policy makers who currently don't serve the needs of our kids on the autism spectrum.

So what is a parent to do? Who should we listen to and how do we know what is best in terms of support for our children? Sooner or later, as ASD parents, we all come to the same realisation: we will be dead one day and we will no longer be there for our children with ASD. No longer there to fight their cause, no longer there to protect them, no longer there to be their voice, and no longer there to provide for them. All too soon our children grow up and, unless we have considerable resources to pay for long-term care for our children until the end of their natural lives, our most reasonable plan of action needs to be equipping our children with independence.

Nic was really doing well after 1.5 years of behavioural support, also known as Applied Behavioural Analysis, or ABA. He had moved from being a non-verbal, difficult-to-manage child whose constant stims blocked any form of learning. From stimming the majority of the day, he progressed to a child who was talking in 10-word sentences and reading grade 1 books. He was attending a mainstream preschool and participating in class with his peers.

As with most children with ASD, as we head towards new goals both socially and developmentally, our children resist. Change is hard and giving up what is known and comfortable is never attractive. Nic was at this stage and his parents felt the program wasn't a good fit for him, so they decided to move Nic to a special needs school. The school was a welcoming place where the children could set their own pace.

I saw Nic incidentally at the new school a year later while attending a meeting. Nic had lost all his speech. He was sitting at a desk blankly staring ahead. He didn't recognise me and was no longer reading. My heart broke for him as he was neither happy nor achieving his full capacity. Now while some may think this is all he was capable of and we shouldn't change who he really is, having worked with children with ASD for many years, this is not the case. All people with ASD are capable of learning.

Consider Ravi. He started off much the same as Nic: non-verbal, strong behaviours, high stims, and low learning. His family stuck with the ABA program as they saw change. They trusted our experience and expertise. Ravi is now in grade 2 at a mainstream school. He leads the class in maths and reading and has an insatiable desire to learn. He loves doing class presentations and, truth be told, we have to ask him to stop talking at times. His affection is real and warms our hearts. Now while Ravi will always have social challenges and behavioural quirks, the difference between his path ahead and Nic's is sadly worlds apart.

So what is behavioural support? It is an evidence-informed approach for ASD which works on trying to bridge the developmental delays those with the condition have. Quite often, due to limited communication skills, children with ASD have strong behaviours because they are frustrated. Once we assist children in developing speech, we see a marked drop in tantrums and outbursts.

Behavioural support, like many long-standing approaches, has some rather rough roots, but it is not what it was in the 1960s at its conception, when children were physically punished and harmful methods were used. The lack of awareness of what ABA is today can prevent parents from pursuing a tried and tested method to help their children progress.

That being said, however, there are low quality ABA services in South Africa. People pose as behavioural professionals while working without an approved ABA curriculum and without supervision. I would caution all parents to do a thorough investigation before embarking on an ABA program, as not all support plans are equal. Ask to see relevant credentials, not only facilitator or consultant wording. Be wary of providers who are going solo, as ABA involves multiple instructors per child and supervision at all levels.

Also be cautious of ABA programs which do not include social skills, attention to sensory issues, self-regulation of behaviour, or developing communication skills. Attention must always be given to understanding why a child with ASD is doing what they are doing. It is never a case of the child just being naughty.

Parents often say, "You and your team have changed my child's life." I have to reply that the child has changed our lives too, as each one is unique and each one has something to offer our world.

Dealing with 'Pain in the neck' Autism moms A compassionate look at advocacy, exhaustion, and what sits behind persistence.

Really, mothers of children with Autism Spectrum Disorder (ASD) live up to their reputations of being pushy, demanding, and generally a pain in the neck. I hear it all the time from schools I consult in. "That mother is like a dog with a bone. She doesn't know when to give up," the school staff say in frustration. ASD moms respond in disbelief when medical professionals say that their children are not capable of learning, and they don't take lightly to strangers telling them how to raise their child with autism. I know all of this to be true because I too am a pain in the neck ASD mom.

ASD moms don't start out being confrontational. We start out looking for help, but when door after door gets closed in our faces, we have to learn how to fight back for our children. Autism moms get a rough deal. The only people who are really on our side are other parents of children with ASD, and even then there are opposing views on how we should help our children and which support options are the best. Schools don't want our kids. Just try getting a child with ASD into a government school. Family members often point the finger at you because you seemingly can't discipline your child, and adults with ASD criticise you for trying to get help for your child because they say ASD is part of who your child is and you shouldn't try to change that.

It's a case of picking who you want to offend the least. Any decision you make is going to get someone's back up. The reality is that we as parents and families of children with ASD are also affected by the condition. People who have ASD don't experience it in a vacuum. It is concentric in its impact, starting in the middle with the person with ASD. The first shock wave hits the parents, then the siblings, the grandparents, extended family, and friends. On the outer circles are schools, sports clubs, and medical facilities, followed by the general public. The least affected, with the smallest ripples, are the government policies and policy makers who currently don't serve the needs of our kids on the autism spectrum.

Since there is low awareness and understanding about ASD, autism parents are subject to judgement from strangers and family alike. We are all too familiar with the sighs, the rolling of eyes, the unkind comments, and stares all directed at our children. And while autism organisations preach acceptance and tolerance, and should continue to do so, in reality parents of children with ASD experience first hand what exclusion feels like. We learn early on that we will have to be our child's advocate and his or her voice. This inevitably involves having to be the squeaky wheel until you get the oil. We don't take this as a chore, but it does take its toll on our energy.

When encountering another pain in the neck autism mom, who comes across as insistent and commanding, bear a thought for what you can't see behind the scenes and get out of her way as she blazes a path for her child.

Caz Collins, Behavioural consultant, M. Med. Sci, ASD
Mother of a 16-year-old son with ASD
Director of Breakthrough Interventions, South Africa

Autism is one of the most misunderstood childhood disorders Malachi's story, family stress, and early warning signs for autism.

There were many low points in the early years of parenthood for Caz Collins, a Durban mother whose son Malachi, 9, has autism.

"I was accused of being a bad mother many times," she says. "One of the manifestations of autism is difficult behaviour and it is very misunderstood by people who do not know about the condition."

Like many families, the Collinses structured their lives around their child's limitations. Eating out was difficult because of his food avoidance and inability to tolerate unfamiliar settings. Fireworks would cause tantrums and getting caught in the rain was a problem. He could not handle the sensation of the water falling on his skin and taking a shower was out of the question. Cutting his hair would be a struggle from start to finish with non-stop screaming and thrashing around. If he was at a park, there would be tantrums if "his" swing was taken or if he had to wait in line for a slide. In addition, his language was delayed by 2 years and he had no social communication. All of this made socialising something of a nightmare.

Fortunately for Malachi and the Collins family, he received structured support from an early age, when the family was living in Denver, Colorado in the United States. Today he is a high-functioning pupil in a mainstream school in Durban.

Caz has experience with autism both as a professional and as a mother. She is a trained behavioural consultant who will be starting her Master's degree in autism this year. She also runs a support group for parents of children with autism.

"Living with an autistic child can be extremely stressful, and 80% of parents who have a child with autism end up separating," says Caz. "Because challenging behaviour is typical of children on the autism spectrum there are parents who do not take their children out because of it. Having a child with autism is stressful for the whole family but behaviour and communication can improve with the right support."

In Caz's case, she noticed changes in Malachi when he was 15 months old. As a toddler, his behaviour worsened as he became picky with foods, threw tantrums, and would not respond when spoken to. When baby Ethan arrived, the family thought his difficult behaviour was his way of adjusting to a new sibling.

"Experts said we were not disciplining him and we tried everything to improve his inflexible behaviour," says Caz. "At age three, his speech development was poor and we decided to take him for a complete assessment. He was diagnosed with autism and while it was a shock, it was also a relief to get a diagnosis. We had been living in West Africa and when we returned to the US, I signed up for training."

Malachi started an intensive Applied Behaviour Analysis (ABA) program. "It was hard and there were many tears but we just had to work our way through it," says Caz.

He attended a preschool that catered for special needs, but for starting reception, finding a school was difficult. He was not eligible for a special needs class as he was academically within the normal range, but without help in the classroom his learning would be hindered, so his support professional was sent along to school.

At the end of grade 1, Malachi was the regional winner in a spelling bee competition that involved 20 schools. Support tapered off as he improved and when the family returned to Durban, Malachi enrolled at Eden College in Glenmore, where he is now in grade 4.

"He is doing well at school academically but still needs support at times and has some social difficulties. His communication has improved a lot. At home he behaves like a typical child, asking for more TV time and fighting with his brothers. Although we are not at the end of the road, when we look at where we started and how far we have come, I am filled with pride."

There are many support approaches available for children with autism but ABA has the most research backing for success, dating back to the 1960s. For many families in South Africa, however, access to support is all but barred due to financial restraints. Disability grants and funding for appropriate schooling for children with autism are in desperate need.

"I have yet to meet a child with autism who is unable to learn. With early support and the right approach, there is hope for children with autism."

Autism fact file

Autism is a lifelong, complex disability which appears to have a genetic and environmental cause.
It occurs in one in 110 children under the age of eight.
It occurs in four times as many boys as girls.
It can present in many ways and is referred to as Autism Spectrum Disorder.
Differences are seen in language and communication, social interaction, and imagination, with rigid thought patterns and behaviours.
Autism is lifelong, and with early support, individuals can be helped toward their full potential.

Early warning signs

Limited or absent eye contact.
No pointing or babbling by 12 months.
Delayed or absent speech.
Lack of joint attention, meaning limited mutual enjoyment of an activity by referencing back and forth with another person.
Absent or limited imitation skills.
No response to his or her name being called.
Lack of interest or response to age-appropriate toys which are exciting.
Repetitive, ritualistic, or obsessive behaviours.
Lack of need for social interaction, preferring solitude.
Does not look to a parent for reassurance during an unexpected event, such as being approached by a stranger.
Failure to develop peer relationships.

Parenting a child with Autism Spectrum Disorder isn't for sissies Independence, sibling impact, and the hard work of believing children can learn.

Humeria, aged 4, sat quietly at the red plastic table. She was smiling. "Something is wrong with these pictures," the facilitator said, pointing to four sequencing cards on the table. Humeria studied the cards, then arranged them to follow the order of a story. "I did it!" she replied confidently. "High five!" said the facilitator, holding up her hand.

Humeria loved learning now, despite the rough start when she didn't know how to sit at a table or focus on a task. She had responded positively to the structured program, and long gone were her parents' concerns that she would never talk as the doctor had told them shortly after her diagnosis of Autism Spectrum Disorder (ASD). Her speech was not yet at peer level, but she was catching up and social issues were still a problem.

The facilitator moved onto another program and Humeria's brother, Ravi, entered the room and sat down at the table. The facilitator took out a Mr. Potato Head toy and put it in front of Ravi. Humeria immediately began to cry. "No! Mine!" "Ravi is going to have a turn first," said the facilitator, "then it's your turn. We have to wait."

Humeria continued crying. "Look at the timer," said the facilitator. "It is almost your turn, Humeria." Humeria ignored the facilitator and began yelling, "Mommy! Mommy!" Her mother entered the room and told Ravi to go to his room and Humeria to go watch TV. Angrily, she addressed the facilitator: "You need to stop teaching my child to share. She doesn't like it. We have a lot of money and we make sure we buy three of everything so each of our children can have the same. There is no reason she needs to learn to share."

It was shortly after this that the family discontinued the program, despite Humeria's progress and potential. Their priority was that Humeria was always happy, even at the sacrifice of advancement and independence.

I find myself in a unique position of being a behavioural consultant working with children with ASD, as well as being a parent of a teenager with ASD. Just like the parents of the children I work with, I didn't always know what the right thing for my child was. I too had my tearful days, and still do, and I too had to put my trust in the professionals who worked with my son.

As parents, our role is to prepare our children for adulthood. For those of us who are parents of children with autism, adulthood looks rather different from the norm. Nevertheless, we need to take our children to the highest place of independence we can, because let's face it: as much as we don't like to think about it, we as parents will be dead one day. We aren't always going to be there for our children and we need to do what we can now to help prepare them for that time.

Telling those who are trying to teach your child self-help skills, "He doesn't need to learn to make his bed, we have three maids for that," as I was told once, is a very short-sighted view. Being able to achieve a task independently swells our children's confidence and courage to try new things, even if there is resistance at the start.

Studies show that early intervention is effective for children with autism (Schopler et al., 1998; Jordan, 2001; Volkmar & Klin, 2005), and research shows that the costs for effective intensive early intervention are 15 to 30 times lower than the costs needed for lifelong support of an adult with autism, to age 55, with insufficient intervention early on (Jacobson, Mulick & Gree, 1998).

Yet sadly, I have been in contact with parents who are willing to ignore this for short-term convenience. Parents who choose not to believe that their children with ASD can improve, who have cancelled support sessions for reasons such as "my cat is sick" and "it might rain." They discontinue support because they "can't afford support and an annual skiing trip." They are the envy of many South African families who struggle to provide food for their families, let alone specialist support.

I am often asked to give advice on parenting children on the autism spectrum. Not all parents like the advice I give, as it takes effort to carry out. Most are genuinely looking for help, but others choose the easy way out because it's just too hard. For example, many children with ASD I am in contact with have decayed teeth. The answer I am given from parents is, "He won't let me brush his teeth." I think to myself, "He is 2, you are an adult, yet the 2-year-old is preventing his teeth being brushed?"

Rather assist the child in building up a sensory tolerance to brushing teeth than avoid brushing teeth, which inevitably leads to general anaesthetic and dental surgery. How much easier it is to teach a child with ASD personal hygiene than to teach a teenager. But to do so requires persistence and considerable energy.

When siblings are involved, parents of children with ASD don't always think of how their parenting impacts their neurotypical (NT) children, meaning children without ASD. When the child with ASD wants to watch something on TV, the NT child must immediately switch off what he or she is watching, otherwise the sibling with ASD will tantrum. Parents allowing this don't realise the message it is giving to the NT sibling: you are not as important to us as your brother with ASD. What he wants is more important than what you want.

Parents I have been in contact with over the years have said things like, "Well his NT brother must just understand that he always wants to sit in the front seat of the car." To the NT child the implication is, "You are second best."

Having trained in behavioural support in the USA and having lived in Denver for 7 years, I noticed a striking difference in the attitudes between parents of children with ASD in the USA and those in South Africa. As parents in South Africa, we seem to be very authority-driven. A doctor says that the child will never talk and your child will need to be medicated to control behaviour. Parents accept it.

In the USA, I found parents will make a way. They will prove the doctors wrong and they will keep searching, keep believing, until they find an approach that works for their child. In South Africa, parents follow what teachers say about their children with ASD. A teacher I was in contact with this year boldly exclaimed, "Why are you giving these parents false hope? This child will never read." With structured support, he has now started to read, despite his teacher's lack of faith in him.

I am a firm believer that all children with ASD can learn. I see this with every child with whom I work. This has caused many a conflict between myself and the schools of my clients, where teachers say things like, "What am I supposed to do with this child? He is at school 5 hours a day and he can't read," or, "There is no need to teach a child with ASD to count." It is difficult for parents to believe in their child's potential if teachers don't.

At a recent assessment for a new client, the parents pleaded with me, "Please help us deal with our child's behaviours." I outlined some strategies for the family. The mother looked puzzled and said the school the child attends, which specialises in teaching children with ASD, had told her she must never say "no" to a child with autism. Effectively, the child's screaming, throwing things, and hurting family members had been taught as the family had been advised to allow the child to do whatever he wanted without any boundaries, regardless of the impact on others.

And what of Humeria? I saw her 2 years later at a playground. Humeria came running up to me and hugged me. "You no visit anymore?" she asked. Clearly she had missed our sessions together. I felt sad knowing her mom had misinterpreted crying as a sign that she was unhappy rather than as a sign of struggle to learn a new skill which she would have mastered. I noticed she was still not able to socialise with other children at school, when she visibly wanted to, and that her speech had made no improvement since the family stopped structured support 2 years previously.

Make no mistake, parenting a child with ASD is no walk in the park. And many, many of the parents of children with ASD with whom I am in contact give whatever it takes for their children to progress: commitment, reassessment of priorities, surrendering personal plans to an uncertain future, giving up finances, and sacrificing self for the child's best interests. But it also takes action to promote change, even when it seems impossible. They prove true the motto: "I'm raising a child with autism, what's your super power?"

This pregnancy was different A personal story about pregnancy, uncertainty, autism, and hope.

By the third one, one would assume the drill was pretty routine, but it was not. The thing was the emotion was different. This pregnancy was not planned and, apart from having given away the crib, the car seat, and expensive pram, I now had a 5-year-old child with special needs. The thought of another child, who may also be at risk, was frightening to say the least.

My 5-year-old had been diagnosed with autism the year before, and amongst the trips to the occupational professional, speech professional, and the daily behavioural support program, I hadn't really processed the reality of what a child with autism meant for the long term. Now, faced with a possible second child with autism, I was overwhelmed with what that might mean for our family emotionally and financially. My second son, who was now 4, had escaped unscathed from the clutches of autism, so it was possible to side-step the condition, but there were no guarantees.

My oldest, at age 5, was more than 2 years behind in his speech and needed OT support for low muscle tone, midline issues, and coordination. Apart from his speech being needs-based and only in 2-word phrases, such as "want food," we had significant behavioural issues: the tantrums, the meltdowns at the change in routine, the obsessive interest in Thomas the Train, and violent reactions to sensory stimuli such as being rained on or hearing a balloon pop. Yes, they made a lot of money out of us. Those early years were tough on us, and hearing that 80% of marriages where there was a child with autism end in divorce didn't help either.

I sat in my endocrinologist's office. I had just had my second radiation for thyroid cancer following successful cancer surgery the year before. At my check-up, I told my specialist that I was overly tired and feeling very emotional. She attributed it to stress, as all good doctors do, and said she would monitor me over the next few weeks.

It turned out monitoring was not necessary, as the cause for the tiredness turned out to be: surprise, I was pregnant. I was completely thrown. Calculating back, the time of conception was just before my radiation. Now, apart from the risk of a child with autism, what would radiation do to my developing baby?

I cried and cried hard. I didn't feel we could share the news of the pregnancy with anyone, anticipating the "congratulations!" and "wow, that's fantastic" which would come from supportive friends. I could only feel desperate.

Waiting through his first year was stressful, as we looked for any emergent signs of autism. Various professionals kept an eye on him and, as the months passed, I allowed myself to relax. Autism had passed him by. Now at age 6, he remains fit and healthy and eager to start grade R.

My oldest, who has autism, is now 12 and is also mainstreaming with his peers. He will finish grade 6 in 2012. As a result of his diagnosis in 2004, I added to my psychology background and am now a behavioural consultant supporting children on the autism spectrum. Starting out with a new client always pulls on my emotions as I remember our adjustment to autism, but I can confidently tell those new clients that children with autism can learn and, with the right support, some are capable of mainstreaming.

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Humeria, 4, had made progress. Despite the rough start when she didn't know how to sit at a table or focus on a task, she had responded positively to structured support. Gone were her parents' concerns that she would never talk, as the doctor had told them shortly after her diagnosis of Autism Spectrum Disorder (ASD). Her speech was improving, but social issues were still a problem.

She had been having support sessions with me and, in one session, her brother, Ravi, entered the room. I gave him a toy, but Humeria wanted it, shouted, and yelled for her mother. Mom entered the room, furious. "You need to stop teaching my child to share. She doesn't like it. We buy three of everything so each of our children can have the same. She doesn't need to learn to share."

It was shortly after this that the family discontinued the program, despite Humeria's progress and potential. Their priority was that Humeria was always happy, even at the sacrifice of advancement and independence.

As a behavioural consultant working with children with ASD and a parent of a teenager with the condition, I find myself in a unique position. Just like the parents of the children I work with, I didn't always know what the right thing for my child was. I too had my tearful days, and still do, and I too had to put my trust in the professionals who worked with my son.