As parents of autistic children, we are often tasked with bridging the gap of communication between them and the outside world. But, who bridges the gap for us between our children and ourselves? Many children with autism begin their early lives as nonverbal and some never become verbal. For me, trying everything was important. We began therapy as soon as possible, which for him was when he was 18 months old. I had been told he is losing skills, but autism was not something I suspected. I actually thought my child was deaf. I had his hearing tested 3 times because I could not wrap my mind around why he was not trying to communicate. There were times I honestly believed he could not hear at all because he would not respond to me when I spoke to him. After the 3rd hearing test, it was painfully clear his hearing was better than mine. I began searching for answers, which of course lead me to the diagnosis of Autism. To be more specific, he was diagnosed with severe non-verbal autism. No glamorous TV portrayal here, just the gritty reality.
I was told by a psychiatrist that my son would need a lifetime of care, and that it was important that I begin looking for a facility to place him in as it would be best for me in the long run. I was appalled upon hearing this. How could this psychiatrist even remotely suggest something so horrible to me. Do you know how old my child was when I was told this? 2, he was only 2. I threw myself into books, papers, studies, basically everything related to autism that I could get my hands on. I was not ready to hear the nonsense this man spewed at me, and I certainly did not believe him, not even a little.
My plan was clear, my child needed help and this was not the person who would be doing it. My first priority was evident, it was to get him into therapy asap. He began therapy at 18 months old while awaiting autism testing which when he was little was age 2. Once the diagnosis was confirmed after the age of 2, the therapy changed to be more geared for autism and became more intense. I decided I would do total communication, which is everything. Every form of communication from sign language, PECS cards, an AAC (augmentative and alternative communication device) and actual speech of course. I never pushed him towards any one of those options, instead, I used them all, and ultimately let him choose what worked for him.
My goal was to facilitate communication between him and the outside world. It took YEARS. I am not going to lie nor even sugar coat how incredibly difficult this was and still is to this day. My son ultimately made the choice to use speech as his main form of communication but it did not happen for many years. He lost his speech at 12 months old, and did not regain the ability to talk again until he was 8 years old. 8 years I waited to hear him say anything. His speech is far from perfect, and most people do not understand him unless they are around him frequently. It is still very much a work in progress. My point is that no matter how grim the diagnosis is, and no matter what you are being told by people who are supposed to be the experts, listen to your own heart, head and gut. It did not take long for me to realize all these people who are supposed to be the best of the best in this field did not live it. Why should I listen to someone who never raised an autistic child? Studying the topic is simply not enough to make you an expert. Until you have gone days, weeks, months, or years with less than 3 hours of sleep every night, or dealt with being hit, kicked, bit, pinched, hair pulled, dodging flying objects, or experienced a real melt down for hours on end with no break, or tried cooking 3-4 different meals per meal time because your child has sensory issues so severe that it affects everything, including the food they eat, then you are not qualified to tell me what is best for my child. That being said, there is hope. I learned more effective ways of working with my child from speech, occupational and physical therapy than I ever did from the psychiatrists, psychologists, behaviorists combined.
If you want your child to be able to communicate, then you must try every tool at your disposal. I advise speech therapy, but if you cannot get it, you can buy PECS cards online at amazon. Put them everywhere in your home, such as the bathroom, the kitchen, the bedroom, or you can even make 1 large communication board in your home and include a calendar so that your child can go to that board and make their needs known. You will need to teach your child what each PECS card means so that they know how to use them. Reward your child for every attempt at using the card and every successful use of the card. Incorporate sign language. Some children do really well with that, and same principal applies. Reward your child for learning and using each sign. The AAC device used to be extremely difficult and expensive to obtain. I remember my son’s was 10k. That is not even an exaggeration. However, these days we have more affordable tools. You can find many AAC apps in Google Play and Apple Store, they are also online as individual apps you can purchase and many apps even have free versions you can download to a tablet and try. And of course, speech. Even if your child is unable to speak currently, you still say each word with every tool you try. Sound the word out slowly, show your child how to form the words with your lips. I used phonics videos and books, and even sang the words slowly because music works. Music therapy is a thing and it helps so much.
I worked on eye contact with my child, because I needed his attention and focus to get through this. He still struggles with eye contact. Your child does not need to be looking in your eyes to be paying attention, you just need them to focus on the area you are trying to work with, so for example, sign language, they need to look at your hands, phonics, your lips, pecs cards, the actual card you are teaching at that moment. The process is not fast. It takes time and patience. You cannot quit because you think they are not getting it and you most certainly cannot lose your temper because you think they are not paying attention. I promise they know more about things than you realize.
It is not an easy road. We have jobs and household responsibilities, some may have other children who also need your attention, as well as your partner who also needs you. You may have family that can help, or you may have family who will not help because they do not know how. I went through a divorce with my son’s biological father during the hardest part of establishing communication for him, as well as trying to get him past having melt downs. Regardless of what was happening externally, my goal was to get my child communicating. He is now 17, and he talks non-stop. It does get easier, but you will always face new challenges. You just have to remember that this child chose you for a reason. Remember, your child chose you for a reason – you're their anchor, their hope, their world. Don't give up; the seemingly impossible is attainable. I've been there, and still am, speaking my truth from personal experience.