The Black, White Or Grey Path For Autism?
When we hear the term autism, many of us think of Raymond, the young man with an encyclopedic memory and amazing math skills portrayed by Dustin Hoffman in his Academy award winning performance in the movie Rain Man. But all autistic people are not Raymond as Autism is a spectrum disorder.
Still being debated is the question on whether children with autism should be in school or should be placed in a specialized autistic remedial environment. The RTE act stresses on inclusion, but B.Ed courses do not prepare teachers for this inclusive classroom scenario and thus inclusion becomes a mere illusion on paper.
If schools remove autistic children (sometimes under pressure from other parents) then the path followed is black. If the school enrols autistic children in the name of inclusion then the path followed is white, because it would have upheld the rights of the autistic child. But do white and black work in autism both for the child and other children?
No, it does not. The path required is grey. In many aspects of autism, the children are sound sensitive and would not thrive in a classroom scenario where the noise, clutter and chaos will only add to their issues. So it is not inclusion (white) or seclusion (black) that is the answer, it is a carefully selected path of grey (integration) that has to be arrived at by the parents, therapists, school and teachers.
It is not easy to deal with autism cases as there is very little expertise on autism available in India. Global research on autism is also fairly new and being a spectrum disorder, each child requires a very individualized plan. It is a spectrum which means that its symptoms and characteristics find expression in many different combinations and in any degree of severity. At one end of the spectrum we may find a mute child crouched in a corner of his room, spinning a paper over and over again for hours while at the other end of the spectrum would be a child who screams nonstop and flaps arms or tends to lash out physically.
Autistic or autism disorder is one of several pervasive developmental disorders (PDDs). These disorders are characterized by severe widespread impairment in social interaction and communication skills and stereotyped patterns of behaviors, interest and activities.There are a range of treatments of autism. Drugs don't cure autism, but many with autism also suffer from multiple problems such as depression or seizures, and the drugs can help with those secondary problems. Some of the therapies for autism world over are:
Allergy induced Autism and Casein/Gluten, Auditory Training, Music Therapy, Doman/ Delacato Method, Holding Therapy, Sensory Integration Therapy, The Squeeze Machine, Lovaas Method, The Son-Rise Program taught at the Option Institute and Fellowship, Picture Exchange Communication System (PECS) , Speech-Language Therapy, Occupational Therapy, Vitamin/Mineral Therapy
The grey path would be the ideal path and would mean that:
- The school and teachers would have an individualized plan of interacting and supporting the therapies of the child
- The teachers would understand and incorporate the point of view of the mother/parent in regard to interacting and handling the child in various situations. Sometimes mothers/parents have developed a unique way that works best for the child
- Teachers would not only be trained in understanding autism but the individual case of the child with support from therapists
- The parents, especially the mother, would have the emotional support knowing that the child will be not only accepted in the classroom but integrated
- It is the mothers that require the most support and counseling. It is an extremely high emotional state for the mother to work on educating a child with autism as the mother has the constant fear of ‘what if I am not there?’ When children with autism are understood by their immediate community of friends, relatives and teachers, it becomes easier for the mother and family
- Mothers would also understand not to have too many performance based expectations from their child and would not enter into irrelevant comparisons
- The other children in the classroom would also undergo counseling to help them understand why the child is behaving in that particular manner and how to support the child as friends. This would help them grow up to be citizens of tomorrow who accept differences in the society at large
- The other children would also need therapy in many cases as they too undergo depression, disconnect and worry about the child
- Parents of other children would have to go through a mandatory interaction session conducted by the therapist, to help them understand the needs of the child and how to talk to their children about the child and what the autistic child is facing and how to interact and what to avoid
- The Principal of the school should be open to facing a lot of angst from other parents about integration of autistic children. This is where empathy is required and parents need to be reassured that their child’s learning or ‘safety’ is not at threat and having an inclusive classroom will help inculcate required empathy and EQ skills in children
Parents of autistic children should keep in mind:
- Every child is different, not only your child! The difference is that there is a diagnosis for your child! Other children may have difficulties of varying degree like attention deficit, memory, behaviour etc.
- Don’t let your child’s diagnosis become your child’s label. I must quote Dr. Samir Dalwai, Developmental Pediatrician here, “Let’s move from labelling to enabling”.
In Germany, there is no word called ‘disability’ but hindered. In Italy, the word Ritardo means delayed. So don’t be upset if someone calls your child ‘disabled’, they know not what they talk!
- Never, ever feel ashamed or guilty about your child’s behaviour. It does not help, it only increases stress for your child.
- Have play dates at your home, your child deserves to have friends and let the friends see the child in the home environment. This will help them understand your child better when they see how you all interact and make the child feel included.
- Don’t call your child ‘special’ and don’t allow your child’s school to use that term too. When I asked a group of 10-year-olds why they were mean to a ‘special’ child they shared that it is not fair that he/she gets this title, does it mean we are not special to our teacher? Worth thinking about.
- It is truly time to push for a change in teacher training programs to include education about inclusion but till that happens it is time schools trained teachers as part of their in-service training and helped parents understand about inclusive and integrated practise.
It’s time to have assorted chairs in the classroom and to have the grey view on inclusion, let’s stop the black and white.
Dedicated to all parents of kids with autism, you are doing a great job, it is because of you all (and a special one that I know) that these kids are not the forgotten children.
Also read: Busting Myths Around Autism
Explore the entire collection of articles: Special Needs#specialneeds