‘What is there to protect autistic persons?’

WESTERN BUREAU:

The apparent lack of accessible help for families of autistic children is an issue that Nicolette*, a mother of an autistic son now in his 20s, wants to see changed after years of enduring unsympathetic and unhelpful responses to her child’s struggles.

Sharing her experience with The Sunday Gleaner, Nicolette said that while she has help from family members in raising her son, other parents of autistic children may not be as fortunate.

“We do not have much in terms of Government help, and you want it to be like what the First World has, although we are not a First World country. I think more effort and time can be put into giving assistance and more resources because there are lots more people out there who do not have the help like how I have had it from my husband and my other child,” said Nicolette.

While getting her son assessed in 2009 was emotionally challenging by itself, Nicolette faced significant hurdles in helping him adjust to his autistic reality afterward, including putting up with instances of bullying.

“My son met all his milestones and he was doing pretty well up to about age one, being able to count from one to 20 and using plenty of monosyllable or ‘one-one’ words. Then we noticed that eventually, he lost all of that, as while he was able to follow all the instructions, he was not doing the things he used to do anymore. When I was to do the official assessment for him, he was about seven years old, and I was not pleased at all because the assessor did not spend any time to do the assessment properly,” Nicolette recalled.

“Two years afterward, I did another assessment with another psychologist, and she thought he was more of a severe case. I was upset with the diagnosis as it was devastating, and we had to spend quite a bit of cash on speech therapy to get the child speaking,” Nicolette continued. “I also remember one situation where a person was talking harshly to him, and because he was not crying, they thought he did not have feelings. When I spoke to my son, I realised he was hurting, and I went back and spoke to the person harshly and said, ‘Don’t talk to him like that because he has feelings.’”

Nicolette’s concern about available autism programmes is shared by Maia Chung, the founder of the Maia Chung Autism and Disabilities Foundation (MCADF), who is unhappy about the apparent lack of visible channels for autistic persons and their families.

“What is there for the social protection of persons with autism? The technocrats need to stand up and say what are the therapy avenues and other provisions that are in place for autistic persons. What our advocacy entity has seen is toothless legislation and ignoring of the autism-affected family,” said Chung, herself a mother of an autistic child.

“When I started my organisation, I had a mother who said to me, ‘Maia, you’re way younger than my autistic son, who is in his 40s’, and she said she wished somebody like me had been around before, because they hid her son’s autism due to stigma, and then they sent the son to a school where he was abused,” Chung continued. “There are no social arrangements that have been started in the past 16 years that is helping any family suffering from the wholistic issues of autism.”

In 2022, the MCADF called for legislation supporting persons with autism, including employment for high-functioning autistic persons and protection from various types of abuse.

Data from the US Centers for Disease Control and Prevention as at May 16 this year indicates that one in 36 children in the United States alone was diagnosed with autism spectrum disorder in 2020, an increase compared to one in 150 children between 2000 and 2002. The World Health Organization estimates that approximately one in every 100 children globally has autism.

It should be noted that Jamaica’s Ministry of Labour and Social Security operates its Early Stimulation Programme, which was launched in 1975 and focuses on children up to age six with developmental challenges including autism, cerebral palsy, and Down’s syndrome.

When asked about the Ministry of Education and Youth’s interventions for autistic children, Minister Fayval Williams told The Sunday Gleaner that learning assessments, which her ministry started in 2022, will continue on an annual basis.

“In 2024, I think we are all more aware about autism and that our children can be anywhere on that spectrum, and even adults can be on the spectrum. We are learning what it is we need to provide for children who have been diagnosed as being on the spectrum,” said Williams.

“Two years ago, we started doing a full assessment of children as soon as they get to age four in the system, and we do that to give us a sense of what is their ability in terms of early numeracy and early literacy, to see if there are any special needs that can be identified at that age, and to provide the support for it. We will continue doing that assessment each year so that we can identify those children and provide the support that they need,” Williams added.

Nicolette wants autistic children to be enabled to meaningfully contribute to the society in which they live.

“I think that there are more available resources now compared to when my son was younger, but not as much as there should be. We, the parents, need to have more done for us,” said Nicolette. “The government institutions do not have as much assistance to help the children to become as functional as they should be. You want them to be able to look after themselves, interact with persons, and understand what is going on in the world.”

*Name changed to protect son’s identity.

christopher.thomas@gleanerjm.com