INFORMATION FOR PARENTS OF CHILDREN WHO HAVE BEEN DIAGNOSED WITH AUTISM
If you are a parent of a child who has recently been handed over a diagnosis of “autism spectrum disorders”, then this article is for you. It is possible that the written diagnosis has not been made, simply because the child is yet within 3 years, and several milestones are yet to appear, and therefore it is not possible to label the child at this stage. But perhaps you have been informed about the possibilities based on the history provided by you, and the child’s overall conduct.
Whenever such a diagnosis is given to us, our first reaction is “why me?” Here’s a personal word from another parent: First, it is not BAD news. It is just news. Second, your child is just the same, as he was before this diagnosis was made. He still loves you and needs you. Your faith and love should also stay the same. Autism is just a part of who he is. He is still the same adorable, beautiful, wonderful and amazing child.
Next step is to understand autism thoroughly. Medically, autism is a neuro-developmental condition, usually reported between 1 and 3 years.
Any child who is understood to be on the autism spectrum, usually exhibits some or many of these traits: has poor eye contact, doesn’t respond to his/her name being called, is not able to communicate his needs by pointing or gestures or small words, who does not want to interact or play with his peers, or his toys in a meaningful way, who seems to be lost in his own world, loves to do the same kind of activity again & again alone, is not able to express emotions and feelings effectively, is not flexible and easily adapting, his senses seem to be out of sync, gets extremely disturbed with noise or lights or crowds or touching, or seeks excessive pressure or jumping, finds it difficult to focus, concentrate and follow instructions.
Once the pediatrician understands the clinical condition, he usually needs to do a detailed clinical assessment/ developmental evaluation, and also wants to first rule out other things, and therefore requests to get some tests done: hearing tests (BERA and audiometery), maybe some thyroid function tests, gluten sensitivity tests, genetic tests, other blood tests or investigations etc (depending on the case). Once the other conditions are ruled out, most of the times, the child can be presumed to be on the autism spectrum if he/she shows a high score on the screening tests (eg mChat that detects the high risk cases). Once the child completes 3.5 years, the pediatricians apply the DSM-5 criteria to see if the child fulfills the criteria to be on the autism spectrum (or use other evaluation scales to make a diagnosis or to understand the severity eg ISAA or CARS etc).
Once the parents know that a child is falling on the spectrum, it is always good to assess and evaluate the gravity of the condition, at that time. Please remember that all assessments and evaluations are ONLY indicative of the current status, and DO NOT BY ANY MEANS DICTATE THE PROGNOSIS for a lifetime. A child can improve remarkably on the autism scale, through early intervention programs and through continuous training and teaching in a structured way, with lots of visual supports.
There are some amazing teaching and learning methodologies that parents can adopt to help their child overcome most of the challenges, if they start really early.
And so, it is really important that parents need to understand some clear facts about their newly diagnosed children, to develop a better connection with their children. These are: 1. Children on the autism spectrum have several sensory disintegration issues. When we process sensory information through our senses, we filter out a lot of irrelevant information from the background. For example, if we are talking to another person, the sounds of the AC, fridge, fan, traffic etc can automatically recede into the background, and we can focus on the voice of the other person. But for autistic people, it is difficult to filter out the extra sounds. All the sounds are equally being heard by an autistic child, when we are giving him a simple instruction like “sit on the chair”. Infact the sounds of AC, fan, traffic, and even the sounds of some construction work going on, 2 buildings away from your house, would be heard many times stronger by your child. And therefore it is extremely difficult for the child to stay calm, and listen to us. He could have a sensory meltdown if too many instructions are passed on at that time, when he is already under sensory overload. Therefore, we need to understand the sensory needs of these children, and have to address them by giving sensory-friendly environment and through appropriate sensory integration therapy techniques with the help of Occupational Therapists and Sensory Integration therapists. Once we understand these techniques, we can do a lot, at home to help them cope with these sensory challenges.
Children who have proprioceptive needs, want to jump and climb and seek pressure. Children who have visual needs watch TV in a peculiar way.
When we help our children to satisfy their sensory needs through appropriate means, they learn to calm themselves down through these coping mechanisms. Therefore, it’s important to realize that jumping is a need of a child, and so is flapping hands, or looking at lights or covering ears, or touching or smelling hair. All these and several such “peculiar” activities are an indication that the child is trying to satisfy his sensory needs through various means. Stopping him or depriving him of these ‘peculiar’ activities will not help him. Teaching him to use more socially appropriate coping ways will help him much better. For example, if a child jumps on the bed and sofa, we get him a trampoline or 2-3 mattresses and a bean bag to jump and crash. If a child wants to flap hands and hold pencils for visuals and sound, we give him a drum to play.
2. Children on the autism spectrum have some difficulties processing ‘verbal’ or auditory information. They may be slow or weak at making sense of spoken language, and therefore if a visual support is given along with a verbal instruction, and some time is also provided to help them process the information, they are better able to cope and learn.
3. Autistic brains rely on “structure”. They perform best in structured environments, because their brain is wired in such a way that it functions best when there is clarity, precision, predictability, certainty and consistency in the environment.
Structure needs to be applied to the physical space (by creating clear visual boundaries of what is where. Eg where does the child sleep, where can he play quietly, where can he jump, where can he sit and flap hands (to relax himself) etc.
Similarly, structure needs to be applied to the time. A schedule or a time table which clearly tells the child visually (through objects or pictures) about what is he expected to do now and later and after that. Eg as soon as he wakes up, the first object on the schedule can be a toothbrush, then a small towel piece, then picture of his breakfast and then his school bag etc, to clearly tell him, what is he supposed to do in a sequence. So his entire day is structured, and he has enough clarity about what is he supposed to do, where is he expected to do and when. (eg his schedule can clearly tell him visually, that he can sit alone and play, in his free time, which is right after his special education class. So the anxiety and restlessness is replaced by clarity. The transitions (or changes from one activity to the other) become easier, with lesser crying and tantruming. Since autistics are visual learners, it’s important for us to give them ample visual supports, so that they can communicate effectively through pictures (the basis of PECS: Picture Exchange Communication System, or through other means (Alternative and Augmentative Communication system).
Autistics also love to do activities that are structured, which means, activities that have a clear beginning and a clear end. It’s easy and motivating for child on the autism spectrum to attempt such activities, and complete them too. Vague games are a challenge for them.
4. Autistics are quick to learn routines (good or bad). Whatever routine they learn once, they are likely to remember it for life. Therefore it’s best that we give them “good” routines from the very beginning. Infact, autistic people do not learn from their mistakes. They learn their mistakes. So it is always best to teach them skills in an errorless way, with prompting (or help), so that the scope of mistake is minimized, and from the very first day, they learn the RIGHT way of doing any particular thing.
5. Autistic children are concrete learners. They do not relate to vague questions or remarks. Whatever we wish to inform them or instruct them, we need to do it in short simple clear sentences, with the exact information that needs to be given. Eg if we wish to appreciate his art work, a remark like “Hey, it’s so cool !!” will be extremely confusing for such a child (so an autistic child might switch off the AC or start crying if he thinks that its quite hot). So we need to say, “Hey your painting is very nice. Good job.” Similarly, if he is running around, instead of saying “O really, so you want to run like a horse now. Please no, my head is bursting..!!” (the child might actually start howling in horror, thinking that his mother’s head is actually bursting), we should be saying “Sit on the chair, finish your work” or “it’s your free time, please go to your play area and jump on your mattress”
The challenges of autistic children can become their strengths if we are determined to give them the right direction. Their visual learning skills can help them go a long way in academics, sight reading and fine motor activities, only if we help them find structure. Similarly their abilities to “focus on detail” and do things with “perfection and precision” can be a big advantage over the neurotypical children. Their ability to do repetitive activities, again and again, alone, can enable them to learn and master skills that are “boring” and “difficult to learn” for other neurotypical children.
Therefore, it is good for parents to start reading and researching about the BEST TEACHING AND LEARNING STRATEGIES to help children on the autism spectrum to manage their challenges, and hone their strengths.
Advice: Kindly do not get lured by the biomedical treatments available for autism as of now. Many of these treatments are not evidence-based, and are being marketed by various pharmaceutical companies. The parents are easy emotionally vulnerable targets, and end up spending lakhs of rupees on such treatments. The prime focus should be on teaching & learning through structure and visual supports, inculcating good routines, incorporating yoga, sports activities and physical exercises in to their children’s lives and spending quality time with children.
The personality of an autistic person totally depends on the environment provided in the early years of his life. So, please make the best of these years for you and your child. Focus on the prime goals: 1. Independence 2. Communication (by various means and not just speech) 3. Sensory integration 4. Inculcating Structure and Good routines. Their childhood is precious. These crucial years will never come back. If a mother believes in her child, no “label” or diagnosis can stop a child from achieving his best potential.
Good luck. Enjoy the journey. Enjoy your child.