Raising a child with ASD:A different way to learn, sense and view the world.
I am a mum of two beautiful boys. The eldest is a smart fifteen-year-old, a competitive athlete — and a real chatterbox. The youngest has just turned 6, he is very observant, loving and full of joy. He was diagnosed with ASD (Autism Spectrum Disorder) at 4 years of age, here in Ireland where we live.
I have resisted writing about his diagnosis for while for two reasons. First of all, I wanted to be ready, to be 100% honest about my experience and secondly, to have enough knowledge to pass on correct and constructive information to readers.
Patricia Shetter (Behavioral Analyst and Project Coordinator for the UC Davis ASD Educational Initiatives for the Mind Institute) gives a direct definition for ASD: ‘Autism spectrum disorders are a group of neurodevelopmental disabilities that impact development in two core domains, social communication and restricted repetitive patterns of behavior or interest’ . It is succinct but opens up a range of possibilities to be explored.
According to data provided in the new American Diagnostic and Statistical Manual (DSM5), autism is described based on the levels of support needed by the individual. The very term ‘Spectrum Disorder’ is given because of the recognition of variability in the manner in which symptoms are manifested. Here follows the simple account of our son’s diagnosis and the beginning of our journey of discovery.
Our baby was born as perfect as expected and without complications. Our house was never the same. Everything was happier and more complete. Alert, feeding like a trooper he would soon start to babble at 5 am and no one could make him giggle as much as his older brother.
At 7 months old a cold caught him in full force, saline solutions and infant paracetamol did not relieve the flu symptoms including a high temperature. After a lot of comings and goings to the local GP, we saw ourselves in the hospital paediatrics/ AE in a desperate situation. Our strong and healthy baby was diagnosed with meningitis after undergoing a lumbar puncture.
Despite having contracted meningococcal meningitis, considered one of the worst types of the disease, and having suffered seizures that put him into an induced coma, incredibly, emerged intact from what seemed like a horrific life-threatening situation. Predictions of vision/ hearing loss and brain development damage have not materialized.
His recovery was rather routine despite the rather grim and uncertain diagnosis…
I do not mention those scary days of our lives to promote drama, but to explain that there is no study confirming a link between meningitis or other childhood illnesses with autism. However, since he has had meningitis, we were always alert to his development and started to worry in anticipation of a delay in his speech.
The neuro paediatrician we saw while on vacation in Brazil confirmed what doctors in Ireland had already stated: that meningitis had left no scar on his brain. The delay in speech could be for several other reasons. The doctor also concluded that his limited but existing language would develop in time.
He started walking at 12 months, full of energy and health, showing no other signs of cognitive or physical delays. But at the age of 2, he only had a few words in his repertoire. While paediatricians were not worried, at the age of 3 we realized the progress in the speech was still very delayed. We started to invest more in speech and language therapy (SL) sessions and using PECS (Picture exchange communication system) to help him to build some basic language.
At this stage, his lack of ability to interact socially was evident and the challenge in communicating already caused him frustration. We applied for an assessment (after insisting with the doctor) and we anxiously waited for screening. Here in Ireland, the ASD diagnosis is given by a multidisciplinary team formed by a psychologist, a speech and language therapist and an occupational therapist. The waiting list for a formal assessment via the Health Service Executive in Ireland is long and depending on the area and age of the child can take over 20 months.
Many forms filled and months of waiting we got a date. After talking to us to gather his life history, in conjunction with the tests done during the evaluation sessions, followed by preschool observation they had a result. We were informed of the assessment outcome and weeks later received the report.
During the Diagnosis:
As parents, our thoughts were constantly racing. The unknown is very frightening and Dr Google would confuse us more than inform.
In our house, we have a daddy that is a teacher, not any teacher but a great educator, for 15 years educating children from 4–12 years. Myself, the mum, had some experience working with special children and adults. Even with our background, when we read articles and tried to answer questionnaires we never concluded that our son was autistic.
If he did not look at people’s eyes all the time (sign that he was autistic), he would look up at the sky and point to a plane passing by (a sign that he was not); At times he seemed to be very distracted and smiling out of nowhere (sign that he was), but on the other hand, he did not care about wearing any clothes, was never bothered by noise or being hugged (sign that he was not); He liked (and likes) routine (sign that he could be), but if we changed plans to go to McDonald’s he would run to the car without any problem (maybe he was not); We had doubts if he was assimilating everything we were talking about (sign that he probably was), but when we skipped a phrase from his favourite book he made us repeat correctly, did not stack his toys, did not tiptoe or sit in the shape of a w (ah, he couldn’t be ).
Diagnosis is like a multiple-choice test, without a single correct alternative. Each child on the autism spectrum is unique, just like every human being, whether he is neurotypical or not. Thus, there is a wide variability of expression of the symptoms. The following list describes some characteristics observed in childhood in children with ASD:
- Failure to engage in typical babbling or pointing in infancy.
- Failure to make eye contact beginning in infancy.
- Failure to respond to one’s own name.
- Loss of previously acquired language or social skills, usually during the second year of life.
- Unusual responses to sensory input.
- Unusual movements such as rocking, twirling or flapping arms.
- Difficulty playing with or interacting with peers.
- Difficulty talking about feelings.
- Difficulty understanding tone of voice, body language and gestures.
- Obsessive interest in a particular topic.
- Difficulty breaking from the routine.
Depending on where the child is in the spectrum, he may present few or many symptoms. Also when too young, some weaknesses are subtle and / or masked by other strengths and abilities.
When we received the diagnosis, the professionals asked if we needed a moment alone, or minutes of reflection in case we were feeling devastated. We said no, but we had many questions and they were quite surprised. Only later I understood why. When I started attending newsgroups or joined forums on social media, I realized that many parents receive their children’s diagnosis with pain — a type of cross to bear . or as one online parent described a pending diagnosis of his child as “staring down the barrel of autism.”
Nor do they love their children less, but feel alone and abandoned, in a world in which everything is structured to function in a 98% neurotypical society.
For us, however, whose saw our son so sick and almost have lost him so young, the diagnosis of ASD did not make us sad but explained his difficulties in communicating and expressing himself socially, as well as certain patterns of his behaviour. In addition to allowing us to provide him with the necessary support for his development. Or at least to strive for it.
The report of his diagnosis did not reflect all of our son’s abilities but it pointed us in the right direction. We knew then that with the necessary support and the right environment our son would blossom more and more.
After the Diagnosis:
We are still waiting to access any support or services from the HSE. However, we knew the importance of early intervention for the best results in development. SLT, OT and educational support had to be our priority.
As we had been working on developing his language, the use of visual aids was used as part of our routine. Also, since he has always loved books, storytime in our house happened ‘all the time’ and the librarian became our friend.
When our little one was 3 years of age he began to look for assorted utensils in the kitchen cutlery drawer, such as sieve, wooden spoon, and bottle opener. Almost every day, he would come running and take these items out of the drawer and put them on the kitchen table. I would ask things like, ‘What are you doing?’ Or ‘How cool, can I play?’, But he was always too busy to acknowledge me. Days later, we were watching his favourite ‘Angry Birds’ cartoon when he jumped out from the sofa and ran into the kitchen. I curiously followed him and found him picking up his bits from the drawer and start to build something on the kitchen table. There, in front of my eyes, a replica of the Angry-Birds cartoon catapult started to emerge. He was reproducing the image imprinted on his mind. This is just one of the episodes that show the importance of visuals on his everyday learning.
After the diagnosis, we realized how much our son is of a visual learner. We are all different type of learners or a combination of all types. Some like him learn more easily with the help of pictures, others listening or using doing. A school environment that stimulates all the senses would be ideal for all of us, but in reality, the educational system is still well focused on a type of traditional teaching, in which the teacher speaks, the student listens and follows the instructions. This classroom format, without the help of other resources, would not grasp the attention of our son and many other children.
Using a visual agenda where he can visualize his routine and what comes next is crucial for him. We have one on the kitchen wall at home but sometimes we change tactics a little to get his attention. When we’re going to do something different, we draw it together on a whiteboard. This is more like telling him a story. We also make a list of illustrated tasks on the board in which he ticks each box when the activity is completed. These are some of the numerous ideas to help an ASD child with their daily routine. There IS a lot of information and resources available online about visual schedules, social stories etc.
We became aware of the many challenges for autistic children to self- regulate themselves, processing stimulus from both the environment and the body itself. It is therefore important to help them in the process of sensory regulation, according to the sensitivities of each one.
When our son runs back and forth we know he is trying to regulate-himself through movement. We bought him a mini-trampoline and put it in the kitchen for the wet days he can not run or use the trampoline outside. We noticed that after jumping for 15 minutes he is calm, alert and much more communicative.
In the past, there were times he needed a strong hug that even hurt my neck. So, when the occupational therapist explained his need to feel pressure for self-regulation, it made perfect sense. Simple tips such as laying with his tummy-down on a gym ball or making a pillow sandwich with him in the middle while applying pressure for few minutes makes him calm down and stay focused on homework, without sensory distractions which might his learning.
Noise doesn’t bother him so much or restrict him from going to places, but if I turn on the kettle/blender without any warning, he will get up and move to another room. However, if I tell him that the kettle will beep for a minute, it does not bother him. Which does not surprise me, that many times have been startled at work (yes, I work in an open-office) by the increase of volume of a colleague headphones without any warning? Now, how would that feel if that volume was tripled on my head as per my sensibility? Would it be easier to deal with it if I have been prepared for it? Preparation is key for children in the spectrum.
Every day we strive to model situations and always prepare him for what comes next. An example of this was the preparation for our last vacation trip. We showed him books of places that we would visit, we told stories and we made the itinerary in sequence with pictures. First, we go in Mum’s car to the airport (picture of our local airport). Once there, we have to stay in a queue like a line in school (picture of people queuing); then we’ll get on the plane and eat a cookie ( picture of a boy sitting on a plane eating a snack). We’ll swim in the pool when we get to the hotel (picture from the pool printed from the hotel website).
We must recognise the challenging behaviour and daily frustration for some children and adults on the spectrum. However, I would be very careful about making excuses and blaming common childhood behaviours on the fact that a child is on the spectrum. Like any child, certain defiance and stubborn behaviours are part of testing boundaries and developing. Repetitive and restrictive behaviour patterns can exacerbate these common childhood’s attitude. Therefore, it is important to get as much help and guidance towards finding the best behaviour strategies that work for your child. Modelling and praising good behaviour and helping your child to overcome anxiety and other challenges that may trigger bad behaviour will develop their self-awareness and ability to communicate through these challenges. At home, we use the ‘Zones of Regulation’ as a guide and a lot of role-playing to help him pick up on social cues and other people’s feelings.
When language began to develop faster, it seemed we had a parrot at home, repeating everything two, three, four times. This phenomenon known as Echolalia, where children can replicate words or echoed after they are heard, is a step that indicates they are developing their spoken language. It can be evident in some children in the spectrum, an indication of how a child is learning how to speak. For whoever needs some extra help with Speech and Language/Social Communication at home, The Hanen Centre has some great resources available.
Let’s not forget the magic of playing. When creating opportunities for your children to express themselves you are giving them space to grow. Let them take the lead, jump in their world and you will be truly fascinated.
Recognizing their skills and using them to help overcome limitations is important. Our example is to take advantage of our child’s ability to process visual information, follow rules and memorize (a typical strength of many ASD individuals ) to help him organize and manage changes in his routine (a typical limitation) with visual agendas.
Spreading the word
Information is everything, but if it is not correct it can do more harm than good. Also, what is good for one child may not be good for another. The interventions that researchers have shown to be effective are called evidence-based practices (EBPs) and will give you an overview of what was studied and tested. This can empower you to make wiser decisions regarding the best practices and interventions for your child.
I recently read a story about children being intoxicated by numerous food supplements and herbs. Not on purpose, but out of desperation of parents in the pursuit of the ‘cure’ for autism. In the euphoria of finding an immediate solution, they would change their child’s diet completely, add much larger than needed amounts of vitamins and mix herbs without understanding that the natural can also overwhelm their bodies and cause side effects. Still with no ‘cure’. How can there be a cure, when there is no illness? But it’s certainly possible that with the correct early intervention, the restrictive/repetitive behaviours and social communication challenges that affect autism children, especially their learning and social interactions, can be manageable and even overcome.
Sometimes an autistic child does have other physical or neurological deficits. Depending on where the child is in the spectrum, the degree of difficulty concerning social interaction, as well as sensory or concentration problems may be much higher than others considered with a high level of functionality. This can weaken the level of social integration of the child, causing health problems related to stress and anxiety. In these cases, it is very important to have access and listen to the advice of specialists: doctors, psychologists, speech therapists and therapists in the area. And is it better to hear about autistic adults talking about their experiences? Temple Grandin is an incredible woman and a great example. Her story shows what it was like to grow up in an age where Autism was not even recognized. Seeking family support groups, people on the spectrum who do not mind answering questions and sharing their experiences is of great benefit.
Today my son attends the local primary school. He has access to extra support and resources. Other children in the spectrum sometimes need a school with a more supportive environment, depending on their level of needs. Barriers are not definitive, just as it’s there today, it can be overcome tomorrow, everything can change. As parents, we must acknowledge the weaknesses of our children, because only then we can help them overcome them or find the best way to manage those difficulties. Acceptance is not a sign of weakness but of loving unconditionally.
Rich or poor, here in Ireland is the same call for social integration, and yet we have big barriers to claim as integration will not happen when parents haven’t access to basic services for their children. The reality in my home country of Brazil is even more daunting. Public support is very small and in terms of availability of resources in the education system — when exists — , it’s very expensive. Our flag for integration and acceptance has to be on a global scale. Starting from advocating Autism to our neighbours, work colleagues, the person behind us in the supermarket queue, sports coaches, teachers and leaders.
The message I’d like to leave here today is that you, Mom or Dad, can move mountains. You can educate a teacher, create communication strategies and teach your child how to play and to interact. It should not be like this. It should not depend on you alone, but there is no better soldier in this world to fight your son’s fight. The greatest battle is yet another, against ignorance. It is our duty to inform people what it is to live on the spectrum, to advocate for our children until they come to do it for themselves. You are not alone, we can do it together. In the end, neurotypical or atypical, we all have the right to a healthy, happy and fulfilled life, being accepted as we are. Nothing less.
Please, feel free to leave your feedback or reach me via email: firstname.lastname@example.org. This is all new to me and I value your insight.