Interview 9: Autism Spectrum Disorder

Interview with the guardian -

 How do you feel about the label autism?

 How do I feel? I feel normal. That would be my statement. I feel normal. I don’t feel differently. What I feel differently is that it requires a different set up for education and for of course lifetime skills.

When was Abheer diagnosed as autistic? How old was he? 

So Abheer is ADHD. He is twenty years of age and he was diagnosed with different, well ADHD got added much later but for us as parents to know that my child is under the spectrum, it was at the age of five plus.

How do you communicate. Are they any hindrances with that or is it difficult ?

 No, because I have been working as a therapist and an educator in this field for over a decade now. I personally feel like communicating with children or young adults with autism or under the spectrum or even Down Syndrome for that matter is not much of a problem. Communication with a parent on the other hand definitely is a problem. They are more of a challenge than the children. So to answer this question more accurately for you to understand,  when a child is diagnosed under the spectrum means the child is diagnosed as autistic. Autism is a huge spectrum, they could be different areas, it could be moderate, mild or severe, either which ways if the child is diagnosed under this spectrum, the most crucial part of the child’s entire life is early intervention which has to happen till the age of seven ideally. The child must get the right intervention. When I say the right intervention means that every day not every month. Every day of his intervention should be monitored so closely in order to get the results which are very important for life. If this early intervention is not done correctly or there have been some loopholes in the process, there will always be a need of something or the other. However, I would still say that the parents who have not been able to accomplish the early intervention strongly or even say that at the age of seven, it is not the end of the world but if you’ve had some ambiguity in with the treatment till that age you still have the next five - six years to try and cover up that gap. But as soon as the child gets into the teens it’s almost 80% tougher to achieve a lot of milestones. So that is where the question like what you just you asked me how do you communicate arises because autism does not mean that they cannot communicate, that only happens when that child as a teenager has not got the right intervention which means that the language, speech, the competent skill problems arise. Thus, there are these little areas which could be dealt with because of early intervention. As I said initially, the first 10-12 years of the child’s life. Yes communication with autistic children is definitely not difficult for me but if you were to probably communicate with my son the only difference I would say here is that he will be reserved. As any other child will not just start babbling out with any stranger in the first day or the second day ,it takes time for any child to open up so that’s the situation with him. If he’s comfortable with you maybe on the  second day he will be your best friend and communication would probably not as sophisticated conversation as ours but he can still communicate socially.

What activities does he enjoy doing?

One of his favourite hobbies is photography because I’ve indulged him into that. Are u asking specifically for my son or is it a general question?

Specifically, for your son

He is very fond of photography. He loves to dance. He loves music and dance. These are the two activities he really enjoys.

Did you choose these for him or how did you get him involved in these activities?

No, you’ve got to nurture them. One thing about autism you have to understand is that unless they don’t show signs of interest you have to build those interests.

 So how did you help him build his interest in dance and photography?

I am 46. When I had Abheer I was only 24. So at that point of time because I had no history and like I said I did miss out on the first 7 years of his life, it was only after he was 9 + years that I started realizing the things that were needed to be worked upon which is definitely the first step. I wanted him to be a good communicator, so my only focus more than academics was that he should be able to speak and his social skills should be good so your question was very apt because a child that is not able to communicate will mean that he is not very social. If he is not social, you don’t want him to be just limited to his family and the house. You want to go out with your child, see the world with them. When he was 10 + I started realizing these important things so my first focus was to develop his social skills and how do you develop those social skills? There is no class which you can sit in and say this is what you need to study for your social skills. You need to plan a lot of creative activities where there are group activities. You start working on a child individually first and then you make your child engage in group activities. So yes, the key to teach them is first building their confidence and then you see where the child’s strengths and help them reach their potential. For Abheer, his strength is not writing skills but he uses Ipad, smartphone with ease as anyone else. I love making him work with computers. He’s going to be starting a computer class also. He knows the keyboard so it’s got more to do with touch than writing which means he is good with fine motor skills. His strength is like using touch which means he can be tech savvy. As soon as I realized this, I started looking for options with creative aspects. I started working on creative activities as I learnt that it is a strength for most of the autistic kids, as it was for Abheer. He showed more interest in photography than in art. Again art requires you to know how to use a pencil,you need to use a brush so he showed that initiative himself. 

In the school I started for autistic and other special needs children called Freesia, there are many activities. We’ve got painting, crafts, dance, music, photography, computers, cooking, gardening. Since we’ve got all these activities that run in our school so Abheer showed interest, we could see that he was happier in a photography class than he was in a painting class so this is how we got to know that his interest lies more to do with stuff which he can do with ease than to do stuff where he needs to use a paper or pencil for.

Do you ever travel without Abheer ?

No. I like to always travel with Abheer. He was a very badly behaved child when he was five. He was badly behaved because he had issues, he was a struggling child. So travel – the first I would say the first 5-10 years was so tough. You cannot even imagine how difficult it was, he would bang his head, pull his hair and my hair, he would pinch and bite because he didn’t want to step out. Then we realised what the issue was - we call it sensory but there are a lot of these issues that in fact troubles a child’s mind and his vision therefore he acts out. Since his intervention in the beginning was not so great he mostly communicated through these behaviours and as I mentioned earlier, my focus was his social skills. But he has come a long way, he just travelled for a month with us. So wherever I go, even if I’m going to a bar with my friends, I take my son with me because he’s twenty. Not that I let him have a drink, he can have a soft drink but yeah at least he goes out. He’s very social. He sees every part of life that he’s meant to see at his age. The only thing he doesn’t like though is when we take him to the theatre, he’s not fond of watching movies or television at all. But we still take him so that even he can get a hang of it and we still try to put that into use.

So yes, we travel everywhere with him. I don’t like to leave him behind and that’s a personal choice. If you had to ask me honestly Abheer always needs to be taken care of. 

Do you eventually want Abheer to be eventually independent and live by himself ?

He would  always require someone with him. That’s why they call it special needs, even if I make him independent my aim now that he’s 20years old is to make him do some work so he will now get vocational training for the next three four years before he starts a job. I will make sure he does a job even if it means for three to four hours but even for the job he requires assistance. And with special needs children anyone can take advantage, so as apparent I would always like to guard him.

He cannot live by himself but he will be definitely be independent to some degree. So I am splitting your question into two. He will be independent. He’s already independent when you talk of independent skills like any other guy - he can bathe himself, he can eat on his own, he communicates very well and very clearly in familiar situations. Coming to the other part of independence he cannot go alone in the car with my driver. I don’t like that. Again, that’s my personal choice. Those are probably my insecurities, I wouldn’t want to send him alone. He cannot live all alone by himself. I don’t see an autistic child with the kind of structures we have in India, they are definitely not sufficient for any autistic child to live alone. Even abroad. In fact India is still better than America. I mean they have a lot of good facilities, lot of assistance and community services but eventually it’s the parents or someone that has to take the guardianship if the parents are not there.

Who are the main people who take care of Abheer other than you ?

 His Father, brother, grandparents and aunt

Does he enjoy reading books?

 No no. If I had to put a child like Abheer into the habit of reading I would have had to probably start at the age of 2. Just get them in the habit of holding a book and if not reading then at least visually get fond of going through books. Unfortunately Abheers interest is zero only because as I said early intervention was not so great. He’s more interested in photography and computers.