Living with my autistic daughter has been challenging and life-transforming at the same time. There are days she opens up to me and we have enormous fun playing all sorts of games — it always brings me joy to watch her lovely smile.
And then there are the terrifying days: the seizures and other complications, the drives to the hospital in the middle of the night. So many times I have wished for an early warning, or that I had noticed the early signs of autism. It would have prepared me so much better for what came.
I want to use this page to encourage parents caring for autistic children — especially those whose children are still toddlers. As they grow older, there are numerous health challenges they may face. I will lay out the most common of them here, so that you can prepare — and so that none of them takes you by surprise.
The challenges I cover
- Sensory imbalance and sensory disorder
- Impaired mental functions
- Seizures and convulsions
- Less common issues: fragile X, tuberous sclerosis, physical fitness
Sensory Imbalance or Disorder
My daughter had great difficulty coping with senses — light, heat, smell, taste, and sound. It was only during my research into autism that I learned this is a common health challenge among children with ASD. A sound as small as the chiming of glass could make her erupt: she would cover her ears and scream at the top of her voice. If it catches you unaware, it is genuinely frightening.
The brain of children with ASD lacks the ability to appropriately balance the senses.
The brain of a child with ASD lacks the ability to properly balance the senses, which makes it hard for these children to express their emotions or respond to sensory signals as expected. It is entirely possible for an autistic child to fall and break an arm — and not cry. There was a day my daughter was playing with the candles on the dining table. She was smiling while burning herself. Tears left my eyes when I walked into the dining room and saw her; I was only glad I came at the right moment, or it could have been far worse. This is one of the reasons autistic children need extra care. You have to keep your eyes on them at all times.
Impaired Mental Functions
Certain areas of the brain in children on the autism spectrum may be weak, and this becomes evident when they are tested. When I discovered my daughter was autistic, I took her for an assessment to see where on the spectrum she was. Her score on visual skills came back high — but she scored very low on language skills.
Clearly, my daughter was not the only one with learning to do. As her mum, I knew I needed a great deal of learning of my own to understand her condition and care for her better. It took me two to three years of intense learning before I could understand my daughter whenever she spoke. If you were meeting her for the first time, there is a fair chance you would not understand what she is saying.
This impaired mental function also puts children at greater risk of other mental health conditions — anxiety, acting impulsively (impulsive behaviour), depression, and mood swings.
Seizures and Convulsions
There was a period when my daughter had as many as three or four seizures a week. Sometimes they were mild; other times her body pulsated so hard that I would break down and cry. I am thankful it has eased now — but this is another common health challenge for people with autism, particularly in the teenage years. Reports indicate that 1 in 4 children with autism will have seizures, with onset in early childhood or in adolescence.
The seizures are linked to abnormal electrical activity in the brain. The results range from body convulsions and loss of consciousness to staring spells and unusual movements. High fever and lack of adequate sleep can make the situation worse. An electroencephalogram (EEG) is usually used to detect these electrical activities in the brain.
At the time her convulsions were most severe and I took her to the hospital, a doctor prescribed anticonvulsants — which truly helped. One thing to remember, though: when anticonvulsants are used, it is always good practice to stay at the lowest possible effective dose.
Other, Less Common Health Issues
Fragile X Syndrome
Fragile X syndrome is usually an inherited form of intellectual disability among children with autism. A section of the X chromosome is defective — and under the microscope, it literally looks fragile. It is believed to affect roughly 2 to 5 in every 100 autism patients, with the reported incidence rate of fragile X among people with autism generally put at 2–5 percent.
As a parent of an autistic child, it is important to have them tested for fragile X — especially if you are considering having a second child. Research has shown there is a fifty percent chance that boys born to the same parents will carry the syndrome.
Tuberous Sclerosis
This is usually a frightening diagnosis for people with autism. There was a stretch when my daughter had a run of relapsing health issues all at once, and the pediatrician said he would not rule out tuberous sclerosis. The checks were done — and to my immense relief, they came back negative.
Tuberous sclerosis is rare. It is linked to genetic problems that lead to the development of benign tumours in different organs, such as the brain. According to studies, roughly 1 to 4 percent of people with autism are likely to have the condition. The CDC notes that the relationship between ASD and tuberous sclerosis remains unclear — but the tumours do occur more often in children with ASD.
Physical Fitness Challenges
Studies suggest that both adults and children with autism face a raised risk of an inactive lifestyle and obesity. While autism's social and behavioural problems get the headlines, the motor-skill problems — coordination and balance among them — are too often ignored. Motor and muscle difficulties begin in infancy, and they affect important milestones like sitting, crawling, and walking.
If you are at the beginning of this road: take heart. Not every child faces every challenge on this page, and forewarned truly is forearmed. Keep your pediatrician close, keep notes, and be gentle with yourself on the hard days.
