Shine a Light on Autism

My sister is my hero. When she gave birth to my nephew, 18 years ago, Autism diagnosis was still in its infancy, information was hard to come by, support was few and far between. It was apparent early on that my nephew was different. He would cover his ears at loud sounds, breaking his routine would upset him, he would become obsessed with objects or television shows, he went through a period of time where he would only eat yellow foods.  It took several years to get a diagnosis and I remember their being a lot of debate on where he lies on the spectrum. Was he Asperger? Was he Autistic?

He is high functioning and loving with his family, but social interaction is a challenge for him. His brain is wired differently.  My sister decided to home school him, believing that mainstream school would not be the best place for him. He thrived in my sister’s care. She read everything she could get her hands on, sent him to play and speech therapy and loved him through it. It hasn’t been an easy road. He’s still working to finish high school, but he has dreams of designing robots and studying robotics and university. And I know he will.

To outsiders, some of his actions or outbursts might seem rude. Sometimes he says whatever is on his mind. Sometimes he has physical ticks. Some of this has calmed as he’s gotten older, but life isn’t easy when your brain is wired in a different way.

I remember one year when we were visiting Disney World. My nephew was 10 and his younger sisters were 8 and 6. The girls wanted to have dinner at Cinderella’s Castle and although my nephew had been briefed that we would be having a family meal here with Disney Princesses, when we arrived and got seated, he became agitated. First it was about the food, and then the princesses in costume. My sister ended up taking him out of the restaurant to have a discussion. She was outside the castle and my nephew kept walking away from her with his hands over his ears. She followed him and ended up trapping him between her two arms up against a wall to talk to him, to get his attention, and to keep him from running off. If you don’t make eye contact and get him to look at you, it’s hard to penetrate his autistic wall. He was frustrated and lashed out; she was frustrated and leaned in to try to contain him. There was a scene and someone called security to tell them my sister was abusing her child. My sister has never abused any of her children. She was dealing with him in the only way she could, the only way he would respond to in order to keep things from escalating.

The security team nearly called the police and we were nearly removed from the property because someone on the outside saw a mother dealing with an autistic child and didn’t know it. My nephew was scared to death when security came over and so was my sister.  After some explaining, my sister and nephew were allowed to return to dinner. My sister was overcome with guilt and shame, not to mention embarrassment.  And so was my nephew, all because an outsider didn’t understand the situation. How do you explain this to someone who hasn’t lived it, who doesn’t have an autistic child?

This is why shining a light on Autism is so important. Autism spectrum disorder is all around us. It might be someone in your immediate family, a friend, a co-worker. You would be surprised how many families are touched by this disorder. About 1 in 88 children has been identified with an autism spectrum disorder (ASD) according to estimates from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network. And that’s just those who have been diagnosed.

Although there is no definitive cause for ASD, I know that I’m at risk for giving birth to an ASD child. My husband, my nephew, his nephew are all on the spectrum.  If that day comes, I can only hope I can be as good a mother to my child as my sister has been to hers.

My sister is my hero. For doing whatever it took to care for my nephew for forging a path when information was hard to come by, for pushing for diagnosis, for trying different vitamins, diets, therapies to find one that worked, for not giving up on her first born and for seeing his potential where others saw frustration and hardship.

Symptoms of autism and Asperger syndrome 

Autistic spectrum disorders (ASDs) can cause a wide range of symptoms, and there are many different ways that those symptoms can be grouped.

It is useful for parents to know the signs and symptoms of autism and Asperger syndrome that are related to their child’s stages of development.

Early signs of ASD: 6–18 months old

Although they can be difficult for parents to detect, the signs and symptoms of ASD begin to show between 6 and 18 months of age in most children. These signs and symptoms include the following:

• Your baby often avoids or has limited eye contact (gaze aversion). They may prefer to watch people out of the corner of their eyes or watch them in a mirror, rather than directly.
• Your baby does not follow your gaze. For example, when you look at your watch, a baby without ASD would copy you and look at your watch as well. Alternatively, your baby does not look at objects that have been pointed out to them.
• Your baby has no happy expression when they look at you.
• Your baby does not “babble” (respond in a “back-and-forth” manner when you talk to them).
• Your baby does not seem to recognize or respond to your voice, yet is aware of other sounds, such as a bell ringing or a dog barking.
• Your baby shows little interest in drawing your attention to things by pointing to them or pulling your hand towards them.
• Your baby rarely or never makes gestures such as pointing or waving.

Signs of ASD in pre-school children

The signs and symptoms of ASD usually become more apparent as your child gets older.

Problems with language will become more noticeable. It is likely that your child will begin to have difficulty interacting socially. They will also show unusual patterns of behavior.

The signs and symptoms that often develop during this age are explained below.

Language development

Your child’s speech development may be delayed or they may not speak at all. Most children can construct two-word sentences, such as “ball … want” or “me … drink”, by the age of two.

Delayed language development does not usually affect children with Asperger syndrome, but their speech may be affected in other ways. For example, it may sound very monotonous, flat or unusually fast.

Although children with ASD may have difficulty understanding long verbal instructions, they are often good at visual clues and instructions. This can be used to help them understand things such as visual timetables at school and at home, or picture exchange communication systems (PECS).

Playing

Your child may have little interest in playing with toys in an imaginative way, yet they may play in a repetitive manner.

For example, rather than pushing a toy car across the floor, your child may concentrate on spinning one of the wheels on the car. Or, rather than using blocks to build an object, they may line the blocks up in order of size or colour.

Children with ASD often prefer to play with household objects such as string, pens or keys, rather than toys. They are happy to play alone for hours without needing supervision or attention.

Social interaction

Many children with ASD often appear to look straight through someone. They have little or no awareness of other people.

Your child may have little interest in other children of the same age, or taking part in shared activities.

Some children with ASD may try to form friendships with children but then behave inappropriately, such as suddenly kissing or hitting another child. Or they may be unable to understand concepts such as taking turns.

Behaviour

Many children with ASD develop a repetitive pattern of physical behaviour. These patterns are known as sterotypies.

Examples of sterotypies include:

• flicking their fingers
• flapping their hands
• rocking back and forth
• persistent and unexplained sniffing
• licking objects

They also often enjoy visual stimulation and may be seen waving shiny paper, such as a crisp packet, in front of their eyes or rocking backwards and forwards in front of a pattern of vertical lines, such as metal bars on a fence.

They may sit close to the TV because they like the patterns they can see close up. Their visual skills are often revealed by their ability to do jigsaws or construction toys at an early age, or with a much greater ability compared to their other skills.

Many children with ASD develop strict routines, such as having to watch a certain cartoon at a certain time, or having to watch their favourite DVD from beginning to end, including all of the end credits. If these routines are disrupted, the child may have a severe temper tantrum or act in a self-harming way by banging their head or biting their skin.

Children with ASD often seem unaware of pain and injuries that would prompt other children to seek their parent’s attention. Many parents whose children have ASD notice that they have a cut or a bruise, yet seem happy.

Children with ASD may suddenly become upset and distressed at certain sounds, such as a vacuum cleaner or a motorcycle, or the sudden appearance of bright lights.

Children with ASD often develop a strong dislike for certain foods. This is usually based on the texture or colour of the food rather than the taste. For example, they may refuse to eat soft foods that dissolve in their mouth, or white or beige food such as rice, potatoes and pasta. It is also common that they insist food is separated on the plate and does not touch, which may mean using an airline-style plate to help cope with this.

Signs and symptoms of ASD in school-age children

Some children with mild to moderate ASD may see an improvement in their symptoms as they grow older. Sometimes, attending school gives them an opportunity to learn the social and communication skills that come naturally to children without ASD.

Children with more severe ASD may find the school environment increasingly stressful. This can trigger episodes of disruptive and difficult behaviour.

Signs and symptoms that can develop in older children and teenagers are explained below.

Language

Although most children with autistic disorder or PDD-NOS improve their language skills, specific difficulties with language may persist, such as:

• referring to themselves as “you”, “she” or “he” rather than “I”
• repeating words and phrases, “parrot fashion”, that they have just heard or have learnt from watching a film or TV programme
• speaking in pre-learned phrases, such as “I want it now” or “Where are we going?” rather than putting together individual words to form new sentences
• an unusual rhythm, stress or tone in their speech
• being unable to start or join in with a conversation unless it is about specific topics that interest them, such as dinosaurs or trains

In older children with Asperger syndrome, problems with their use and understanding of language often become more apparent. They include:

• talking “at” somebody, rather than having a two-way conversation
• being unable to adapt the tone and content of their speech to different social situations, for example speaking very formally at a party and then speaking to total strangers in a familiar way
• taking people’s speech literally and being unable to understand humour, sarcasm, metaphors or figures of speech

Social interaction

Older children with ASD often have additional problems at school because they do not understand how to interact socially.

This lack of understanding occurs in a variety of ways. For example, they may not realise that people usually relate to their teacher differently from how they relate to their classmates.

A child may have little interest in issues and activities that are popular with other children, such as music, fashion, sport or going out.

Many children with ASD are not aware that they are intruding into other people’s personal space. However, they can become extremely upset if they feel that their own personal space is being invaded.

All these factors often make it difficult for your child to make friends with children of the same age. However, some children with ASD do manage to form relationships with younger children or adults.

Behaviour

A child with ASD is likely to need strict routines as they get older. Many children with ASD develop a highly specific interest in a particular subject or activity, which usually involves collecting, numbering or listing.

This can range from a usual childhood activity, such as collecting football stickers (though children with ASD often pursue the interest much more intensely than other children) to activities or subjects not normally associated with childhood, such as an interest in train timetables or reading old computer manuals.

Children with ASD may move on from one intense special interest to another after a few months or years. They may wish to hold their special interest toy all the time, and even take it to bed with them rather than a cuddly toy.

Children with ASD prefer rigidity and predictability. Changes, even small ones, may result in major tantrums. This could include not being able to wear the socks they’ve worn for a week, or having a trip to the park suddenly cancelled for a trip to the swimming pool.

Tantrums are common and it’s often difficult for parents to work out what has caused them. However, they usually occur because something they weren’t expecting has happened or because the adult wants to make a change to the routine.

Children with Asperger syndrome often do well at academic subjects that involve facts, figures and logic. But they may struggle with subjects that require abstract thought, such as English Literature or Religious Education.