It happened to me: It took 14 years to diagnose my son with autism

By admin
10 June 2014

Fifteen-year-old Trey Simpson was only correctly diagnosed with autism last year. His mom feels if he was diagnosed earlier and there was better support and more facilities in SA, early childhood intervention could have made a great difference for her son. But despite this, Trey and Lisa Simpson’s story is one of hope, hard work and perseverance!

At the age of 15 Trey Simpson’s been diagnosed with a host of disorders ranging from attention deficit hyperactivity disorder (ADHD) to borderline antisocial personality disorder. But despite having spent countless hours throughout his lifetime with educational psychologists, he was only correctly diagnosed with autism last year. His mom feels if he was diagnosed earlier and there was better support and more facilities in South Africa, early childhood intervention could have made a great difference for her son. But despite the difficulties and disappointments they’ve had to face, Trey and Lisa Simpson’s story is one of hope, hard work and perseverance!

Lisa (38) says she and Trey have been in and out of the offices of a string of psychologists for years. “We’ve been back and forth,” she says. “Trey’s been diagnosed with everything ranging from being mentally retarded, [to having] mild cerebral palsy, ADHD, borderline antisocial personality disorder and pervasive developmental delay.” It was only last year that Trey was properly diagnosed with Asperger's syndrome, an autism spectrum disorder (ASD).

Unfortunately, Lisa says the knowledge she was right in her suspicion that Trey is autistic comes as little consolation now he’s a teen. “If you intervene early enough you can reduce some of the symptoms. But Trey was already 14 years old when he was diagnosed. We’ve missed the boat. All we can do now is damage control,” says the mother from Dundee in KwaZulu-Natal.

Lisa says there were warning signs and problems from the beginning of her son’s life. “Trey was born severely premature. He didn’t meet any of his developmental milestones,” she recalls. “He was behind when it came to sitting and walking. When he spoke, he just babbled. He only started talking when he was about three years old but then, out of the blue, he spoke in full sentences.”

There were other concerns as well. Lisa noticed her son had a dulled reaction to pain. “He split his chin open after falling off his bicycle. He didn’t cry at all. He described his injury as a ‘bump’. But it wasn’t just a bump; he needed six stitches.” And unlike the kind of tantrums his peers would exhibit at his age, his outbursts would often involve a “meltdown lasting more than an hour”.

When he went to preschool, these issues became more pronounced. “He’d attack children or teachers at school, which would result in him being thrown out of school. Before he started Grade 0, he’d been through four different schools. When he was about four year sold a child pushed him and he responded by hitting the child with a plastic cricket bat. I tried to explain to him that his reaction was far worse than what was done to him, but he didn’t understand.”

A year later a child psychologist suspected Trey might have autism. He was referred to a school specialising in teaching autistic children for further assessment. “He stayed in their boarding school for three months. They found that while he had some autistic traits, he didn’t meet the full criteria and he couldn’t attend the school,” Lisa recalls.

But the final blow came when only a short while later an educational psychologist told Lisa her son was borderline mentally retarded. “It’s so very final. It felt as if I was told there’s no hope for him. There is nothing I can do to help him.”

But Lisa refused to believe the diagnosis. “It just didn’t seem right. I couldn’t accept it. When I dealt with Trey he would comprehend things. I still believed that it was autism. The educational psychologist told me that I was highly optimistic if I thought Trey could learn how to spell his name. I was told he’d never be a mechanic, but he could hand the mechanic his tools.”

However, Lisa realised Trey had an advanced affinity for languages and could speak Zulu fluently despite it not being his home language. “His pronunciation was spot on and he sounded like a Zulu-speaking child.” Lisa explains Trey wasn’t formally taught to speak the language and she’d never have known he could if she hadn’t accidentally overheard him speaking to their domestic worker.

Refusing to believe the negative feedback about her son, Lisa enrolled Trey in a special-needs school for children with severe disabilities, but also home-schooled him. She researched learning methods for autistic children and managed to teach Trey to spell his own name in just a week. “I used visual methods, for example cutting out letters in sandpaper and having him trace the letters with his fingers. When he sees or touches things, he retains knowledge better.”

Still, there was only so much she could do on her own. “He wasn’t learning anything at school. When he wasn’t being stimulated, he would act out.” Having Trey enrolled in a school for autistic learners proved impossible. “Public schools require that a child be diagnosed with autism before being allowed entry. There are few private schools for autistic learners and most are very expensive.”

Lisa says Trey currently has the social skills and reasoning ability of a 10-year-old at best. “The early interventions that would have assisted in building the social skills necessary for him to adjust and function in society didn't happen. I've done the best I can on my own but I haven't been able to give him the intensive one-on-one therapy he's needed.

“It leaves me in a very tricky situation. On the one hand I need to give him the freedom to go out into the world to satisfy his need to grow and explore. On the other hand, I also need to keep him safe from the dangers out there. It’s like constantly walking a tightrope. As much progress as Trey has made over the years he still requires assistance with basic day-to-day functioning,” says Lisa.

Trey is currently enrolled in a special-needs school. “It’s a very good school, but they only teach coping and life skills.” Lisa adds that while the learning material in Trey’s current school offers him little stimulation, a mainstream school wouldn’t be able to accommodate him either. “He’s very good with computers. I’ve enrolled him in computer classes after school. He enjoys it and is learning a skill he can hopefully use later in life.”

Autism in South Africa

Experts say Lisa’s belief that too little is being done to help autistic children in South Africa is true. More children are being diagnosed than can be accommodated in ASD-friendly schools and there are almost no autism facilities in rural areas.

There are currently only five ASD-specific government-funded schools in South Africa, all of which are in urban areas, says Sandy Klopper, national director of Autism South Africa. She explains there are numerous private facilities available, but these are usually a result of parents who can’t find a place in any school for their child and then open their own facility. She adds that these can be extremely expensive.

Autism-specific public schools often have waiting lists that are several years long, says Michelle Robberts Hoogenhout, a doctoral candidate at the University of Cape Town’s autism research group. Often children who are diagnosed at four years old can only start attending when they’re six or seven. “This is not ideal at all. Many studies have shown that children with ASD should receive education and intervention as soon as possible.

“Many scientists also think that intellectual disability doesn't necessarily go hand-in-hand with autism but because children with ASD have social-communication difficulties, they don't pick up on social cues from other people and therefore miss vital opportunities to learn when they are young. The longer children are left without intervention the more they fall behind their peers,” she explains.

Getting a diagnosis for your child can be a long process, admits Hoogenhout. “My first piece of advice for parents is not to wait if they notice that something is wrong. Seek help from a paediatrician, psychologist or psychiatrist who specialises in child development immediately,” she says.

She adds that moms should always trust their gut! “Get a second opinion if the doctor says nothing is wrong or when a clinician gives your child multiple diagnoses to explain his or her behaviour,” she says. “As far as possible, make sure the doctor you go to knows about autism.”

Finally, even if the diagnosis isn’t certain, start with intervention. “It can’t do your child harm to receive extra speech therapy or ASD intervention,” Hoogenhout says. There are no quick fixes so make sure your interventions are well-researched, she adds.

What should moms look out for?

Parents can look out for a number of “red flags” which might indicate autism. “There are four main areas of development where these red flags may be noticed,” Klopper says.

  • Communication

Delayed speech and missed language milestones;

Not responding when their name is called;

Any loss of speech or language at any age.

  • Social

Some children:

Display limited or no eye contact;

Don’t play usual games such as peek-a-boo;

Don’t point to things that interest them;

Rarely smile;

Don’t seek attention;

Seem to be in their own world;

Don’t respond to parents’ or friends’ attempts to play.

Keep in mind not all autistic children avoid eye contract, but how they make eye contact is different from the norm, says Hoogenhout. They’ll look for too long or too short periods of time, or avoid eye contact when it’s necessary, for example when they need help. The same goes for smiling and laughing. Some autistic children will smile or laugh, but it’s usually directed at a toy or plaything and isn’t an attempt to share their joy with others. “A lot of autistic children aren’t being assessed because parents or teachers think it can’t be autism as the child makes eye contact and is friendly,” Hoogenhout says.

  • Behaviour

Odd or repetitive ways of moving fingers or hands;

Lack of interest in toys or plays unusually with toys;

Compulsions or rituals that must be followed;

Preoccupations with unusual interests such as doors and lights;

Unusual fears.

  • Sensory processing

Under- or oversensitive to certain textures, sounds, lights, tastes.

Where to get help

  • For more information on autism, go to the University of Cape Town’s autism research group at uctautism.com.
  • Contact Autism South Africa on 011-484-9909, send an email to info@autismsouthafrica.org or go to aut2know.co.za.
  • Email Lisa Simpson at simpson.lisa3@gmail.com.

-Petro-Anne Vlok

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