We have an autism diagnosis, now what?
April 2023
Categories: Articles, Inclusive Education
Several parents have spoken of the shock and disbelief they have faced, the breakdowns in the doctor’s office after getting a piece of paper on a prescription pad that says Autism Spectrum Disorder (ASD). Often, other than the contact information of a psychologist, little is known. We’re talking here about middle/upper middle class families in urban areas, one specific and relatively small segment.
As Inclusive educators, we see autism on a daily basis. Over a period of time, we learn to clearly see the traits, even while being very clear that special educators are NOT qualified to diagnose any condition. There are a few suggestions we have, given our years of experience in Indian mainstream and inclusive schools. We aim to give practical support to parents and the beginnings of a road map. With autism, they say: if you know a child with autism, you know one child with autism. Fortunately, this saying is not as true today as it was a decade ago, even as it is true to an extent. What do we mean? Here goes.
There are some rules of thumb that work in terms of support. This post is written for a young child, assuming diagnosis in the 18 months to 4 years age range. Caveat: I am not a parent of a child on the spectrum, ‘our’ children does mean our children though – as teachers, we get attached to the kids we teach to the extent that my personally parented kids ask me: do you mean us or your children?!
Step 1: Occupational therapy for sensory integration works for all children
This is because sensory integration is based on child development theories and is not limited to autism. However, children with autism are hindered tremendously due to sensory difficulties – some seen, some dangerously unseen.
Our senses form the basis for all our behaviour. To give a limited and understated analogy, imagine sitting in a meeting or a class wearing a scratchy sweater. Imagine hearing nails on chalkboard while you are squirmy and scratchy. Then add on an ambulance siren from the traffic signal close by, heard amplified several times over. Now tell me that your attention to the task (several times non-motivating in nature) would be attentive and on point. The odds are that a teacher or colleague who pushes you to do something…anything…in the middle of this is likely to get a snappy response. The difference is that this is a regular occurrence for a child whose sensory needs don’t allow them to settle down to do what they’re expected to.
In addition to time with an OT professional, a home program is essential. The more time we put in this, the higher are the chances that sensory needs get handled and dealable for our children sooner. How many sessions with an OT? As many as we can get.
Step 2: Speech therapy works very well, even when the child is verbal
If we had a rupee for everytime we heard, ‘Even Einstein only spoke at 4 years of age!’ If there are no other developmental delays and your child isn’t speaking simple words by 2 years, a developmental pediatrician’s advice is suggested.
There are a few important definitions to understand like speech versus communication. As parents, we are most often hung up on speech. We do not suggest any change in the work done in terms of exposure to speech and language, exposure to different kinds of environments, teaching labeling and setting up environments that motivate speech. Like placing the favourite biscuit jar out to reach enough to get some words/gestures out. However, we believe that communication has to be prioritised and whether or not a parent is comfortable with it, a non-verbal child be provided some form of alternative communication.
Imagine you have had vocal cord surgery and can’t talk. Day One passes with sleepy times, ice cream and hand gestures. Day Two most probably will involve a pad of paper to write or draw so that one can communicate for needs. Do you think you would be satisfied with just this, with no exchange of ideas, no asking questions, no making silly comments and jokes?
We still don’t know enough about autism to know why specific areas are impacted very specifically. We do know that it is a myth that alternative communication means children won’t speak.1
That said, providing an alternate means of communication
- helps a child express themselves to the level they can/want to;
- reduces the pressure on speech;
- reports modest gains in speech production;
- provides opportunities to reach the child and develop a bond; and most importantly
- reduces the frustration that comes from not being able to express onself.
Speech therapy is way more than teaching a child to speak. It involves articulation, expressive and receptive language, vocabulary, voice intonation/volume, fluency, the physiology of swallowing/feeding, auditory rehabilitation, cognitive communication and SOCIAL communication. Many of these are areas that children on the autism spectrum need support with, even when they are verbal.
How many sessions? As many as we can accommodate and can get appointments to, at least 1 – 2 sessions per week.
Step 3: Special Educational support is critical to help bring all this together
A special educator usually works on skills. Some do both content and skills. Skills are those that all of us need and use seamlessly everyday – communication, collaboration, listening, learning and social behaviours, etc. Content is the academics that one is familiar with. A tuition teacher does a different and valuable job but very different from what special educational remedials do.
How many sessions? At least 3 a week, once a day is great when the child is not already going to school. Once a day, if possible, for as long as possible, is our recommendation to see progress in the early years.
Step 4: Diet
There are many thoughts and programs for diet. Parents should do the research. A few ingredients are clear and research based answers: gut health, removal of straight sugar, foods without preservatives, using low release carbohydrates, introducing different textures of food and a variety of local food options. Food is much more than a means of survival for us all. We serve food as love, celebrations are characterized by food, social gatherings revolve around food. In all this, a strict regime without sugar can be an issue and might only be needed right at the beginning for some time. Parents can observe what different foods do to their children’s behaviour – sugar at breakfast and incessant giggling is something we have observed several times. Children will want what they want – jam with rotis versus other, healthier options. This part is universal with kids, the part where they don’t face the same consequences and distress/the resulting behaviours that set them apart in all set ups, that’s worth working towards.
Parents will want to weigh the pros and cons, figure out what is practical and can be done consistently in their families and reach that via media for their kids.
Step 5: Activities of Daily Living (ADL) done in step at home by parents, using techniques and tools we know
A parent is the only one who can consistently hold anything that a professional teaches. They know their child in ways that no one does and has access to their child like no one else should have. Given this, we recommend the use of visual schedules, set routines and task analysis to get a child to do the basics of self care like feeding themselves, going to the bathroom independently or at least signalling for help to get to the restroom. wearing their own clothes and shoes, taking their bags and bottles, sucking from said bottle….there are developmental lists that show what a child is expected to do at a certain age. This is only a guideline for those with developmental differences but a good list to work towards.
Step 6: Getting to acceptance
This is the hardest part – going from denial to acceptance. Acceptance of the child as they are for now. This is critical since we have seen that delays in the start of early intervention are primarily because parents resist therapies from a space of denial. It is a professional’s job to help a parent move along this path, talking through fears, providing practical solutions and holding their hand when they cry. Believe me, all of us will be here with our neurotypical kids in some way, shape or form over the years. This is not specific to children with autism but definitely more of an occurrence with children with ASD.
Acceptance is hard but necessary. It might help parents to know that there are many, many success stories, many folks who have faced down difficulties and emerged on the other side, with significant change. Acceptance with enough reading (from credible sites) helps us stop chasing a cure and working towards real solutions. Acceptance also means that one does not try out unscientific and unproven means as therapies, many times eschewing measures that we know might work way better. Therapies are time consuming and expensive, time being as precious a commodity as money for our kids. Accepting that there’s no cure means we use both time and money as effectively and efficiently as possible.
We’re not talking here about trying to get our child to fit beyond what’s possible or necessary. Acceptance helps us get here – figure out what needs to be worked on to improve and what are strengths to refine. Acceptance helps us see our child for who they are, looking past their difficulties. Acceptance helps us not cling to words like mild or moderate. According to the latest DSM (DSM 5-TR), there are levels for support: Level 1 – Children needing support, Level 2 – Children needing Significant Support and Level 3 – Children needing Substantial Support.
Some marriages fall after an autism diagnosis. Many times, one parent is the expert and the other defers to them, while being a provider. We have seen both mother and father in both these roles over the years. it is also critical for the couple to be on the same page so that the child sees consistency on the broad level at home. We also don’t want it to be too consistent, wanting the child to see the human element…that different people do the same thing in different ways.
Getting to acceptance as early as one can means that the child gets what they need closer to when they need it – advocacy, inclusion, therapies and support of all kinds. It helps parents get and feel supported, between themselves and the larger community.
At The Teachers Collective, inclusion is in our DNA. We have been able to support several children with autism in inclusive school settings. There are only a couple of children whom we felt would not benefit from specific setups, given that their needs were at Level 3. Unfortunately nothing related to Autism is simple but we are here for parents to reach out, promising to provide our best efforts for support.
As I write this post, a child on the autism spectrum whose support system I was fortunate to be a part of for 2 – 3 years, is writing his Grade 10 exams. His parents have done a LOT, several professionals have put in their might and an incusive school ensured that he is now writing the exams, refusing all accommodations because he wants to do what the others are doing. Exams are not the be-all and end-all in life. However, keeping expectations high and working together has brought us to this day for this child.
It’s Autism Month in April for the world. For us, working with all kinds of children is an everyday celebration.
We invite experienced parents of children on the autism spectrum as well as professionals to add their views in the comments. It is as a community that our children will succeed.
#Inclusiveschools #ASD #occupationaltherapy #speechtherapy #specialeducators #alternativecommunication #ADL #guthealth #foodwithoutpreservatives #theteacherscollective
References
Featured Image by Bianca Van Dijk from Pixabay