What do autism parents want for their children?

DR RADICA MAHASE

AT A session recently, some parents/caregivers of children with autism expressed dismay and frustration at the fact that they are raising children with autism in a country that is deeply uncaring and unwilling to accommodate their children. The consensus was that neither they nor their children can function properly in society because of serious shortcomings at a national level.

Parents were exhausted at having to fight for their children to be included and some were angry at social media comments that make them feel they were lazy parents who just wanted everything easy.

What do autism parents really want for their children?

First, parents simply want their children with autism to have access to equal opportunities. They want their children to have a fair chance at attending a school, regardless of their child’s ability or their child’s level of development.

They also want their children to be able to access therapy and counselling within the public healthcare system or within the education system.

For those children with autism, who are actually attending public schools, the root cause of parents’ frustration is the backward nature of our education system with its standardised teaching and focus on academic excellence, thereby placing children with autism at a disadvantage.

Parents want the government to acknowledge that their children are citizens of this country and to treat them as such. In the case of education, for example, the government needs to cater to the needs of all children, regardless of developmental age and abilities, and provide an inclusive education for every child.

One parent noted, “My child is a citizen of TT too. Why I can’t get my child into a school, then? And if the schools are saying that they don’t have the facilities or specialised teachers, then why can’t the government develop some programme or centre where my child will have specialists working with him? Why do I have to beg the government to provide a basic education for my child?”

Parents do not want to have to depend on handouts. Many parents had jobs and careers but had to give them up to take care of their children 24/7 because of the lack of schools and childcare options. Parents noted that once covid19 restrictions are lifted, if their special children are enrolled in schools or centres, or had some kind of access to childcare, then they could be gainfully employed and take care of their children financially, rather than having to depend on the disability grant.

Many parents just want their children to have a "normal" life, that is, to be able to go to a movie, to the mall, to the park; to enjoy themselves in a way that is comfortable to them, without people staring and judging them or their parents. They want society to understand that children with autism have feelings too and although some of them might not be able to communicate verbally, that doesn’t mean that they don’t understand and they don’t feel hurt. They want their children to have access to the tools to develop intellectually, physically and mentally so that they can grow up and contribute to society.

Also, parents want acceptance and inclusion more than they want awareness.

According to one parent, “I am happy that there are awareness campaigns every April for Autism Awareness Month and that some government ministries might put out a flyer explaining autism or something like that.

"But I am sorry, that is just not good enough.

"My child deserves more. My child deserves inclusion in the education system, inclusion in society. So, awareness is all good but it’s time to put things in place to really include persons with autism, both children and adult, at all levels in our country. The children need to be included in schools; the adults need to be given opportunities to develop skills and to be employed.”

Parents, caregivers and siblings work assiduously to provide whatever their children need to develop intellectually, to survive on a daily basis, to be comfortable and happy.

What is needed now is for government and society to include and value people with autism.

As one advocate said, “For all we know, the first tools on earth might have been developed by a loner sitting at the back of the cave, chipping at thousands of rocks to find the one that made the sharpest spear, while the neurotypicals chattered away in the firelight.”

Dr Radica Mahase is the founder/director of Support Autism T&T