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The First Step After Your Child Is Diagnosed With Autism

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Maybe you saw it coming. Maybe the idea never even crossed your mind. Either way, your child has just been diagnosed with autism. So where do you start?

By taking a deep breath and not doing anything. Don’t start reading pamphlets. Don’t start calling therapists. Don’t jump online and rely on whatever link pops up first.

Go home, take a deep breath and take a moment to remember everything you knew about your baby before that day.  This is going to help you hold on to the most important fact you’ll need to keep in mind as you and your child adjust to this new reality:

Your child has not changed.

He or she is the exact same person as the day before. All the things you fell in love with about your child are exactly the same. Your child has not changed; your expectations changed. It’s OK to admit that. It’s OK to be scared. We all come up with plans for our kids the moment they arrive — school, sports, clubs, college, careers, marriage, grandkids.

Being autistic doesn’t automatically rule these things out. Some may still go on to have all those things. Some may not. Either way, it’s not about what we want for their lives. It’s about what they want — what makes them feel happy and fulfilled. Their idea of contentment may be very different than ours.

An autism diagnosis doesn’t destroy a child’s potential. If anything, it enables access to the therapies and services a child needs to reach that potential. Once you realize this, then comes your first decision: Do you want to help your child, or try to “fix” your child?

The distinction is important. Helping our children means supporting them and giving them what they need to thrive.  It’s about recognizing that they aren’t broken. They run on a different operating system than most. Different, not inherently worse. It’s about unconditional acceptance, and choosing to recognize and nurture what they can do instead of what they can’t. In other words, carrying on with the job of parenting. The situation may have changed, but our job hasn’t. We’re here to get them the resources and teach them the lessons they need to live their best, happiest lives.

It’s about putting the focus on them — which is the complete opposite of trying to “fix” them.”Fixing” them isn’t about helping to make their lives easier. It’s about making everyone else’s life easier. The family members who refuse to accept the reality of the situation. The people we come across that are uncomfortable being around others who are different. Those who see autism as a curse, a defect, something that needs to be eliminated. You will find examples of these people everywhere, especially online.

This is why I’m begging you to use caution about what you might read online after getting the diagnosis. You’re probably scared, for your child and your family; of course you are. It’s a shock to the system. Everything you felt secure about just got turned upside down, which means you and your child are at your most vulnerable.

There are those who will try to exploit this fear. They’ll insist that autism is going to ruin your child and your family.  They’ll expose every intimate detail of their own child’s life, painting a worst case scenario.  They’ll insist that autistic people can never live full lives.

Then they’ll try to sell you stuff.  That’s when they’ll talk about some great new “cure” or some therapy that will “eliminate” the autism.  They’ll ask for donations to their organizations.  Basically, they’ll capitalize on autism while completely disregarding what people who actually are autistic have to say about the matter.

I’m telling you right now — these “cures” don’t exist.  They don’t need to exist.

I’m not going to say it will always be easy.  Depending on your child’s unique situation, he or she may have to cope with developmental delays and co-morbid medical conditions others can only imagine — even other autistics. Every autistic child is different and experiences autism differently. It is not going to do you any good to compare and contrast your child with others, autistic or otherwise.

Just because you’ve seen an autistic child communicate verbally with no issue, or caught a YouTube video of another that was able to memorize the entire written works of William Shakespeare, doesn’t mean your child will be able to do the same. By that same token, just because you heard stories about autistic adults who need the extra support that comes with living in a residential facility doesn’t mean your child will eventually have to do the same. Even if that ends up being the case, if that’s the path that best serves your child, it doesn’t mean life is over.

You can’t know how things are going to turn out. Your kid is your kid, and his or her situation is unique. There is no road map. This is going to be a lifelong journey — which is why I’m begging you not to spend it trying to “fix” your child.

I know how anxious you may be feeling right now. I’ve been there. That’s why I’m trying to encourage you not to rush into things. You need to get your head right. Take however much time you need to adjust to the new reality. Do this so you can do right by your child.

Your child is always going to be autistic.  No matter how “functional” some autistics may end up being, they never “grow out of it.” Which means you’ve got plenty of time to figure out what’s going to help your child best.

You’re going to stumble and make mistakes. You’re going to get discouraged. Things are going to get hard. I assure you, it’s not going to be anywhere near as hard for you as it is your kid. That’s the most important thing you need to understand.

So just take a moment. Breathe. Don’t feel like you have to come up with all the answers today, or even tomorrow.  Just take a breath and focus on what matters most: your child.

As long as you can keep your focus on your child, and all the love that comes with him or her, the answers will come in time.  They’ll be the right ones, too.

Originally published: May 13, 2019
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