The 'A' Word and Getting Started
“As soon as I mentioned the “A” word, I knew she would not be calling me back.” This was what one of the parents I met through the Little Red Playhouse told me about what it was like trying to register her son with autism in a non-specialized local community program.
Once the registrar heard the “A word” – autism – they said that another child had already taken the last spot available, despite actively recruiting for participants in the program. Sadly, this experience is all too common.
Too many people assume that “autism,” which covers a wide range of abilities and challenges, spells trouble. At Little Red Playhouse we know it simply means, potential. And too often that potential is left untapped because many programs don’t make room for a child with special needs.
If you are reading this site, we assume it is because you -- or someone you know -- is in the first stages of receiving an autism diagnosis for your child, or you are gathering information post-diagnosis. We hope that we can offer some support and guidance – and plenty of hope.
With the right supports, children with autism can learn and thrive.
The first step begins with acceptance. I know, because as the founder of the Little Red Playhouse, I’ve been there myself. My son was formally diagnosed with autism at age three and a half.
A typical autism parenting story often goes something like this:
Your child is experiencing difficulty developmentally and you are seeking help to discover what is happening to them and to discern if it is “typical.”
Many observations may be leading you to worry:
- “My child is babbling but not speaking like his peers”
- “My child doesn’t look me in the eye when I’m speaking to them”
- "My child doesn’t notice or interact with the other people around them”
- My child isn’t walking yet and/or lacks co-ordination”
- “My child is sensitive to food, lights and/or sounds”
Should I be concerned?
Should I wait for publicly-funded diagnostic clinics to do a formal assessment? Or find a private practitioner for a diagnosis? If so, who should I go to?
Then you may, like I did, do a Google search and get bombarded with too much information. How do you sort it all out?
Once you get a diagnosis, then reality sets in: autism. It can’t be. Denial may kick in -- or creative reasoning for some of the child’s atypical behaviours to “explain away” the autism. Like I said, I’ve been there.
And this is a common journey I hear from many parents new to the autism journey. You are not alone.
Added to these unanswered questions and concerns may be the reality of the multitude of physical challenges that your family may be going through. Your child could be experiencing sleep difficulties, eating difficulties, language delays or not having functional language at all, meaning they have no effective way to communicate their needs or wants.
There could be challenging behaviours that may stem from your child’s frustration of not having communication skills. Your child may be experiencing deficits in developing, maintaining and understanding relationships, ranging from difficulties adjusting behaviour to suit various social contexts to difficulties in sharing imaginative play or in making friends, to a complete absence of interest in peers.
You may also be coping with hyper- or hypo-reactivity to sensory input like lights and sounds – or to daily living routines like cutting hair or nails or brushing teeth. Or your child could be experiencing rigidity in routine or the need for repetition in movement or objects.
These are all common traits of autism.
But because autism is officially a “spectrum disorder,” it means a child with autism may experience just some of these things or all of them, and other challenges, in varying degrees. No two children are the same.
Parents that have a child with autism, or are in the process of having their child screened, will likely go through various stages of emotion before they receive their child’s final diagnosis.
Psychologists refer to this as the “Five Steps of Grieving,” which include:
Stage 1: Denial and isolation
Stage 2: Anger
Stage 3: Bargaining
Stage 4: Depression
Stage 5: Acceptance
Upon receiving the final diagnosis, every family will go through their own process of grieving and/or processing time to understand what it all means for their child and their family. Take some time to process it all and ask questions.
Many parents will want to know if any experts can successfully predict a prognosis for their child. The truth is, no one can. Even the experts will base their assessments and predictions on best evidence and what they’ve seen in their front-line experiences, but kids with autism don’t tend to follow predictable patterns. If anything, it’s their unpredictable developmental trajectory that they all have in common, making predictions difficult.
Once you’ve dealt with all of the above -- next step, you have to make a plan. You may have heard that evidence shows early intervention is key. That’s true. But you may wonder, “what early intervention is right for my child?” And it often isn’t until someone helps you with your child’s development that you can finally feel like you are giving them the early intervention opportunities they need to blossom.
So where do you turn for help?
In my experience, when a family first comes into Little Red Playhouse and we discuss their child, parents are in the middle of one of the five stages mentioned above. That’s perfectly understandable.
Often many couples are not on the same page, experience the stages at different rates, and may even be experiencing a breakdown of their personal relationship. It is not an easy time for the family, but it is certainly easier if there is a plan and everyone agrees to what you should be doing.
Depending on the child’s needs, many families have to choose a parent to manage their child’s intervention program. Your new job becomes managing their care for the next several years, while you manage researching what kinds of therapies make sense.
What is available? Who is reputable at what service? Then, ultimately, you the parent, have to decide what is best for your child.
We are here to offer some guidance, even if your child is not ready to begin in our program. And remember, “A” may stand for autism, but it can also stand for many things: “A” is also for advocacy – advocacy for your child.
You will become your child’s best advocate and it requires strength, conviction and determination. But you will find this.
To book an intake meeting with us at the Little Red Playhouse, please email us at: firstname.lastname@example.org or call us at 514-486-4032.