Editor’s Note: Nipa Bhuptani answers parents’ frequently asked questions about the nature of autism and its implications. Bhuptani is a Board Certified Associate Behavioural Analyst who has worked with autistic children for many years, many of whom are South Asian. Along with her role as the head of the autism department at a special needs school, she provides training to educators of children with autism in various cities in India.
What is autism?
Autism is a neurodevelopmental disorder. You usually notice it at age 3 because the child does not make social contact or does not interact. If somebody is qualified or very observant, they might see signs at 18 months.
As a parent, what are the signs for autism I should be looking out for?
1. Social interaction: If the child is coming up to you to share joy, to show you ‘Look at this mommy, look at that mommy.’ If that is not happening, then that’s a red flag.
2. Language development: If it’s not at par with normal developmental milestones.
3. Repetitive behaviors: A child who has difficulty with any change in routine. Say for example the child is used to brushing his teeth in the morning before he has breakfast, and if some day he has to have breakfast before brushing his teeth, and he has a big tantrum over it or can’t accept it—those sorts of behaviors.
4. Repetitive play behaviors: Children who take play equipment and play with it in the same way every time, which would mean that may not necessarily be the appropriate play. Things like lining up of cars, constantly doing the same thing and not being bored by it, not looking for new things to do with toys.
In a broad sense you’re looking at lack of social interaction, lack of imaginative play, and lots of repetitive behaviors.
For babies, look out for things like arched-back babies: babies who don’t let you hold them. Every time you hold them, they make an arched back because they don’t want to be held. Babies that are constant criers, even if they’re well fed and they’re feeling OK, they’re still constantly crying. Or very passive babies who don’t really need any attention at all and don’t ask for anything.
Should I be looking for all of these signs?
What I’m pointing out are just red flags. If there’s one of these things, you really don’t have to think it’s autism. But if there are a couple of these things happening together then we usually red flag the child.
If I see these red flags, what should I do?
The first thing is to go to a developmental paediatrician, and keep an eye on the child’s developmental milestones. There is no specific test that can tell you whether the child has autism or not. It is only an assessment.¹
As a parent of an autistic child, what should my priorities be?
Your priorities should be implementation of an intervention procedure immediately.
That would be the first step. The second would be educating yourself, in terms of how you can best intervene to help your child.
The other thing which parents really I feel in the western culture are doing better with, which we aren’t as South Asians, is advocacy for their children. They need to become advocates for their children’s rights. But well-informed advocates, not just people who go out and fight for rights.
How can I best educate myself about autism?
Go to medical professionals or professionals in the field of education, especially special education, who have dealt with people with autism. Books, of course. The Internet, as long as you are going to resources that are reliable. So don’t look for personal articles and personal histories, but look for anything that is research based.
The other good source is to talk to other parents who have gone through it.
If my child is autistic, how important is academic education and life-skills education?
Utmost important, and it starts the first day. When you first find out, and you know when a child is young, early intervention is your best way to go. The earlier you start educating your child, the better the growth. This is based on research. Every child that has had an early intervention has had better results.
How involved should I be in my child’s education?
Ideally the parent is there the most number of hours with the child. The parent needs to be involved one hundred percent and should be completely aware of whatever education programme is going on with the child because the consistency of that programme needs to be carried out at home. So assuming that because you’ve got a therapist or because you’ve got the teacher and that person is doing the job is not really enough. For people with autism generalization is a big issue so something taught in a certain place with a certain person is not necessarily going to go through to other environments unless it’s actually taught through other environments and that’s what parents need to be doing—bridging that gap.
Is it true that autistic children have a special talent or gift?
Statistics show that about 2 percent of the people with autism have a specific characteristic or a special skill. The 98 percent of the others don’t. This stereotype sometimes causes a lot of harm, especially when parents who are not aware hear that their child has autism and immediately start looking for that trait, and it’s very depressing because they can’t find it. And they just waste their time not educating their child or working with their child on the necessities.
I already have one child with autism. How likely is it that my next child will also have autism?
If your first-born has autism, seek genetic counseling because the chances of a sibling having autism are very high.
Is it an advantage or disadvantage for an autistic child to have a sibling who is not autistic?
It’s both. The child with autism is really going to benefit from the sibling who does not have autism, in every way that’s possible, in the present and in the future when the parents are not there. But of course it’s going to be a bigger burden on the parents in the present. I still see the bigger advantage in it, but the likelihood is that it’s a big chance you’re taking. I know so many families that have more than one child with autism.
What are some good resources for more information about autism?
Have a question for the expert? Email Nipa Bhuptani at email@example.com.
¹The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) is the main diagnostic reference used by mental health professionals. The diagnosis of autism requires that at least six developmental and behavioural characteristics are apparent, that problems are evident before age three, and that there is no evidence for certain other conditions that are similar.