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.
You might be in the stage, when your child is showing some red flags or high-risk indicators in the developmental milestones, for being on the autism spectrum or any other neuro-developmental condition.
It is quite possible that the written diagnosis has not been made, so far, simply because the child is yet within 3 years, and several milestones are yet to appear, and therefore the Clinicians might believe that it is not a good idea to label the child at this stage. But perhaps you have been informed about the possibilities of your child having some kind of developmental variation, 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. Yes, it bothers to know that something is “different” about your child! But it doesn’t at all change the child, that you love with your heart and soul.
Second, your child is just the same, as he was before this possibility of diagnosis was made. He still loves you and needs you. Your faith and love should also stay the same.
Autism might just be a part of who he is. He is still the same adorable, beautiful, wonderful, magically amazing child that you had, since his birth !!
Once you come to terms with this “variation” in your child’s development and a “deviation” in your motherhood journey, the 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:
· May have poor eye contact,
· May not respond to his/her name being called,
· May not be able to communicate his needs effectively by pointing or gestures or small words,
· May not want to/ be able to interact or play with his peers, or his toys in a meaningful way,
· Might seem to be lost in his own world,
· Often loves to do the same kind of activity again & again alone,
· May find it difficult to express emotions and feelings effectively,
· May not be flexible and easily adapting, might resist transitions,
· His/her senses might seem to be out of sync, could get extremely disturbed with noise or lights or crowds or touching, or seeks excessive pressure or jumping,
· Might have difficulties in focussing and listening; might have difficulties in following “spoken” instructions
· Might not be able to “look at” anything that you point towards
· Might not be able to sit at one place age-appropriately, or focus on one fun game, or listen to and follow simple tasks/ activities
Once the Paediatrician understands the clinical condition, he or a Clinical Psychologist 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 audiometry), 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 paediatricians might apply the DSM-5 criteria to see if the child fulfils these criteria to be on the autism spectrum (or use other evaluation scales to make a diagnosis or to understand the severity eg ISAA or ADOS or CARS etc).
Once the Paediatrician, Clinical Psychologist and 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 severity 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 many of the challenges, and empower them, train them for skills and independence, preferably 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.
Some of these points are:
1. Children on the autism spectrum often have several or some sensory integration issues. When we, as regular neurotypicals, 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 people on the autism spectrum, it could be difficult for them 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, few buildings blocks away from your house, which you many not even notice, could 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 Sensory Integration therapists (and also Occupational Therapists who can design many strategies to work on these challenges).
Once we understand these techniques, we can do a lot, at home to help them cope with these sensory challenges.
We can also teach them “coping strategies” to independently learn to manage their sensory needs, to a major extent.
Some examples of sensory integration issues are:
· Children who have proprioceptive needs, want to jump and climb and seek pressure.
· Children who have visual needs might watch TV in a peculiar way or want to watch or avoid traffic lights or the needles of a clock ticking or microwave lights or the washing machine.
· Children who have auditory difficulties, try to create some sounds for satisfying these needs (they bang utensils, throw objects to hear sound or do humming sounds etc) or close their ears with the slightest sounds.
· Children who have tactile issues, might want to touch everything or might want to avoid certain touches (might have extreme difficulties in wearing socks or getting haircuts, nail cuts, face & headwash etc)
When the therapists and the parents together, help these 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 can 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 processing time is also provided right after every instruction, to help them process the information, they are better able to cope and learn.
3. Minds of people on the spectrum 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 3 aspects of the child’s daily life:
· Physical spaces
· Activities & tasks
Structuring the physical space can be done by creating clear visual boundaries of what is supposed to be done 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), where he is expected to sit on a table and chair, where can we splash water, where we can sit and eat etc. The child’s table can be used to study and do work time, at one point of time, and the same table can be converted to an eating area, if a table mat is put on that table. The mat gives a visual structure, and helps the child to clearly understand that now, its eating time here.
Structuring the time (through 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 for younger children, object schedules work great ! As soon as the child 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’s picture 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 children usually take 3–6 months to adapt and learn to follow small parts of the schedules and gradually, in a year or two, they can learn to follow a full-day’s schedule, confidently and independently. That achievement or milestone can be the greatest accomplishment for a mother, who struggles and craves to make her child do some activities “independently” without her supervision and get some “me time”.
The schedules work wonders for everyone, not just for children on the spectrum. When we neurotypicals, work our days with a planner/ organizer/ diary/ time-table, our productivity and work efficiency goes up, manifolds, and our dependence on reminders from others goes down tremendously.
With a good use of a structured time-table/ schedule, the transitions for the child (or changes from one activity to the other) become easier, with lesser crying and tantruming, and the control battles are also reduced drastically.
Since people with autism are visual learners, it’s important for us to give them ample visual supports, even for their schedules, so that they can understand and use these schedules effectively, not just through verbal communication, but also through other visual means like written words, concrete objects, maps, pictures (the basis of PECS: Picture Exchange Communication System, or through other means (Alternative and Augmentative Communication system).
People on the spectrum 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 can sometimes be an intriguing challenge for them.
4. Little people with autism are quick to learn routines (good or bad). Whatever routine they learn once, they are likely to remember it for a long time. Therefore, it’s best that we give them “good” routines from the very beginning. Infact, people with autism 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. The prompts ofcourse need to faded timely, as soon as the child begins to do tasks and activities correctly and errorlessly. Giving prompts and fading away prompts can be the “key” to teaching most skills to a child on the spectrum, when combined with good visual structures, and timely reinforcements.
Therefore, to ensure that they learn “appropriate” behaviors, its extremely important that the “good” conduct is given ample attention and appreciation, while the “not-okay” conduct is given zero attention, so that those behaviors get lost gradually. Any behavior that we want to increase, should be reinforced and nurtured, given due attention, appreciated and celebrated. Any behaviors that we wish to decrease (eg anything that the child does, that we want him to STOP doing), should be either ignored or redirected quietly, without giving a lot of attention. Saying NO to a child on the spectrum, usually, doesn’t help much, except for increasing his/her anxiety !
Unsafe behaviours (like thrashing or hitting) ofcourse need to be dealt with cautiously through redirection and distraction, but as calmly and quietly as possible, with least attention to the undesired behavior.
For managing meltdowns refer to the article:
5. Children with autism 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 !!” could be extremely confusing for such a child (so that child might switch off the AC). 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, and please 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 channelize them in 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: There are some medical interventions that work for some specific clinical conditions of the children, that could be associated with autism, (eg gastrointestinal disorders, epilepsy, headaches, extreme sleep difficulties, eating & chewing challenges, aggression, hyperexcitability, pica, worm infestations etc). But these medications are directed at providing management of the “specific” conditions, that the child is suffering from, and not “curing autism” per se.
But despite the extensive research that is going on, all around the world, there is no “sure shot cure for autism”, till date, since the “cause” for this condition has not been clearly understood.
So, it is strongly recommended that parents should not get lured by the “magical treatments” that are being claimed and marketed for autism all around the world. Many of these treatments are neither evidence-based, nor have been researched through clinical trials.
The research projects that do conduct clinical trials, provide these “treatments under research” to the parents (who consent to participate in these trials), for FREE, and after the parents are explained in detail about the implications of taking that treatment, and after the required consent forms are filled up.
The parents are easy emotionally vulnerable targets, and end up spending lakhs of rupees on some treatments that claim to cure autism.
Instead, 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, providing sensory-friendly learning environments, understanding and managing behaviors appropriately 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.