What most people don’t realize is how difficult it is for a parent to hear that word, Autism, even the suggestion they display all the symptoms. A parent doesn’t want it to be that. What a parent wants to hear it’s just “this” and all you need to do is a simple change of diet or even a pill and all will be well.
But it’s not that simple. In fact there is a grieving process that occurs for parents when they first find out something’s wrong with their child, and again when they are handed that diagnosis.
For school personnel, professionals and members of society please understand it’s not as simple as sitting a parent or parents down and telling them, “We suspect your child has autism you need to investigate and get your child diagnosed,” and then leaving them to figure out what to do first. Imagine this, “you’re in the middle of the ocean treading water, someone in a boat comes by and stops in front of you and yells out, “you’re drowning,” then speeds away without even tossing you a life-preserver.
If you’re wondering what I’m getting at. When a parent first hears their child may have autism, their response is going to be anger, shock, sorrow, fear, any number of emotions. What’s worse is leaving them to figure out on their own what to do. One of the most important pieces of information I’d hope anyone would remember is pass them a name of parent who has a child with autism who has successfully navigated the system. There are many parent groups, and their motto is never turn your back on a new parent. So by putting them in contact with another parent you’ve just thrown them that life-preserver. You’re giving that parent hope and a chance for a successful outcome for their child. Even though you may work with autistic children, it’s not the same as being a parent.
Why would I suggest a parent instead of a doctor or other professional? Ask any parent who’s been down that road, and they’ll share with you any number of horror stories of dealing with umpteen doctors only to be referred to yet another, because they don’t know or they can’t diagnose, and the state or provincial agency that does do diagnosis, has a procedure in place. This procedure can be different with every jurisdiction which could be meeting with certain professionals, such as speech and language pathologist, occupational therapists, pediatricians, an entire team which may have at least a two-year wait list and political agendas in place.
A parent who has been there can help a new parent by providing them the correct information that will hopefully make it easier.
Knowledge is power. And it’s important to empower parents. Some of the key points a parent or parents group can provide to a new parent are:
- Funding sources.
- Diagnosis, how to go about. What and who to avoid. Who you do want to call.
- Therapy. Providing a list of credible therapists with a proven track record.
- Who to avoid (yes again), who has scammed other parents or fleeced them of their life savings with promises of miracle cures. (And most likely every parent with a diagnosed autistic child has been a victim of this in one way or another.)
- If they are associated with the government in any way, run the other direction. Ask a parent they’ll tell you why.
- In some places when your child is diagnosed with autism you are assigned a social worker, because governments view this as a social problem, not a medical condition.
This list can seem daunting. But it’s not that bad. If you’re given the right information you can successfully navigate the system in your child’s best interest. And remember it’s important to give the parent the tools to do for themselves, not do for them.
If you are a parent with a child with autism what other information would you provide to a new parent who needs to know what to do first?