Delays in diagnosis concern Port aux Basques mother
PORT AUX BASQUES – There is little worse for a parent than watching their child struggle while awaiting a call from a medical professional who can actually help. For Jackee Sweet, that frustrated and helpless feeling has lasted for the better part of a year.
Sweet first began to suspect her son, Alexander, might be autistic when he was around six months old.
“He didn’t dance,” says the young mother and entrepreneur, who has other relatives on the spectrum and is aware of some of the signs. “Babies normally jump and dance.”
There were other signs as well, including Alexander not making eye contact and hitting himself in the head. When she took him to visit doctors, they assured Sweet that Alexander’s behaviour was normal for toddlers of his age.
Sweet kept monitoring Alexander’s growth and progress, growing more concerned as her son continued to fall behind in meeting typical developmental milestones. She finally put her foot down and demanded Alexander be tested for autism.
Alexander’s doctor agreed with Sweet and sent him for a battery of tests, including audiology and child psychology. Alexander’s hearing is fine, but the psychologist’s report confirmed what Sweet had been suspecting all along.
“They said there’s red flags for autism,” said Sweet. “Autistic tendencies, but it’s not severe so I guess that’s why it is taking so long.”
Sweet took her son to Corner Brook to meet with a team from the Janeway Children’s Hospital, but since then things have slowed considerably. Just to get her son assessed by two specialists took seven or eight months, and Sweet is tired of jumping through hoops to get Alexander the help and resources she feels he needs.
She said the delay stems from the fact that usually, a child development team will review all data and officially diagnose a child as being on the autism spectrum.
“You can go to a pediatrician,” said Sweet, “but from what I was told they don’t like doing it unless it’s very severe.”
A recent teleconference with Alexander’s doctors projected that an official diagnosis isn’t expected for another 10 months. That delay likely means missing out on help during important early development time for Alexander, such as working with an applied behavioural analysis (ABA) therapist.
“They would come to our home and work with him,” said Sweet. “It’s very crucial that he gets the ABA therapy before he goes to school.”
Once Alexander reaches school age, the amount of time he would spent with that therapist is reduced significantly.
“They preach very strongly that early intervention is key for autism, and it is,” agrees Sweet. “The younger you catch it, the younger you start working with them. They can learn in their own way then.”
Coping skills are crucial in a child’s formative years, but Sweet is finding it all but impossible to get Alexander access to a therapist who can properly teach him. Meanwhile, she is taking advantage of all the resources she can to help her son.
“Right now, we’re only in speech therapy, but every child qualifies for that, not just autistic children.”
Although it’s only for an hour a week, Sweet has found even that little bit has helped Alexander greatly. She has also arranged direct home service once a week for an hour, which is a playtime/learning session for Alexander.
Sweet now takes comfort in the fact that members of the Port aux Basques autistic community, such as Autism Involves Me, have contacted her with offers of mentorship and support after she expressed her frustration with the medical system on social media.
“The peace of mind alone for me ( helps),” said Sweet, truly grateful to those who have reached out. “This is taking such a mental toll on me.”
Sweet also gets help from her family, but like every parent of a child who needs medical intervention, the waiting is simply brutal.
“I know people who have waited five or six years,” says Sweet, who is determined not to let her son endure a similarly long wait. “They shouldn’t have to wait that long.”
The Gulf News has reached out to Western Health for comment.
Jackee Sweet is concerned about the delay in having two-year-old Alexander diagnosed with autism.
Alexander is showing signs of autism, according to his mother, Jackee Sweet, who has other relatives on the spectrum.