There are few things in life more stressful for a parent than discovering something is “wrong” with your child. Specifically with autism spectrum disorder, adjusting to a new diagnosis can be extremely difficult. The diagnosis itself has been described in research as one of the most stress-inducing life event related to raising a child with a disability. (Kuhn, 2006)
In my private practice, one of my specialties is helping parents navigate this difficult time. I, too, traveled down this difficult road in 2001, when my own son was diagnosed, and it was honestly one of the most difficult times in my life. The only thing that was more difficult was the lack of necessary support during the year that followed the diagnosis day.
If your child was diagnosed with an autism spectrum disorder within the past year, this is post is especially for you.
Here are five things I wish I had known.
1. You Must Grieve
Grief is part of life, and grieving your child’s autism diagnosis is necessary.
You had hopes, dreams and plans. You didn’t realize they could be taken away so quickly. And you certainly did not sign up for this.
Perhaps your child was even developing “normally” and came to a screeching halt. Perhaps they lost skills and “faded away”.
You will need time to process and make sense of all that is happening. It’s happening to your entire family. Autism is a family disorder; no one in your home gets to opt out of being affected by it.
You will bounce back and forth from anger to sadness, to disbelief. You might bargain with God or the Universe, and look for people to blame. It’s all part of the normal grieving process. The good news is, these feelings will not last forever. They will not be as raw as they are right now.
Give yourself the time and space necessary to grieve. It will come and go in waves. For autism parents, the grief tends to be cyclical. During different stages of your child’s development, growth and progress (and there will be all of those things) stages of grief may creep up from time to time. That’s okay. You’ll become a master at being able to recognize your own triggers and deal with them. If you’re not able to do this, a counselor can help.
2. There is no “window.”
Often parents tell me their therapist or doctor has told them there is a window of time when their child can progress most effectively; That if they want their child to talk, walk, run, skip, tie their shoes, or be self-sufficient, that they need to do so before age (insert one here) or else it will never happen.
Believing in this window will only add to your already-heavy stress load. It will cause you to make poor decisions and spend far too much money. It will skew your view of your child and of what she is capable.
I was told about the window and the race to get in as much therapy as humanly possible before it closed. The therapist was well-meaning, and truly wanted my child to progress.
But she was wrong.
I was wrong.
There is no window.
So calm down. Breathe.
Research surrounding the brain and it’s ability to grow and transform is extremely promising, especially regarding our kiddos. My son, who is currently 17 at the time of this writing, has just learned how to communicate through typing. Just a few months ago, we figured the language we had obtained was what we were going to get. But that’s not true. He can now communicate his feelings and preferences in away he wasn’t able to before. And as a result, his verbal skills are also improving.
If anyone tells you there is a window, they’re misinformed.
You have more hope than that.
3. You must become a master at self-care
Growing up, very few of us were taught how to really care for ourselves. To be honest, self-care was a concept I didn’t know even existed until autism came into my life. But it is something we absolutely must master in order to survive.
Taking care of you is not selfish, greedy or rude. It is, however, necessary.
If you’ve ever been on an airplane, you know that before takeoff you’re instructed in the event of an emergency, to put your oxygen mask on first, before helping children. That’s because you’re no good to anyone if you can’t breathe.
This is an emergency. If you don’t take care of your needs, no one else will, and you won’t be any good to anyone else.
Learn how to breathe; To handle your own emotions.
This is not an option.
Take time for you. That way you can be the very best help to your child…and your family.
4. Your extended family and friends might not “get it.”
Some of the most difficult issues that come into my office surround the subject of extended family and friends. When something negative enters our lives, our family and friends want to help. They really do. So much of the time well-meaning comments can be misconstrued, unhelpful or sometimes even hurtful.
Often, when people don’t know what to say, they say things they think they are supposed to say.
“Well, at least now you know what’s wrong.”
“He doesn’t seem autistic to me. You should get a second opinion.”
“I don’t see what the big deal is. He will be just fine.”
It will be important for you to know that very few people know what to say in situations like this. And “helpful” is a relative term. One parent might need reassurance that everything will be okay. Another might just want family to listen. Clarify in your own mind what it is that you need from your family and friends. And then let them know what is helpful and what isn’t.
Sometimes even spouses will say ineffective or unhelpful things. They are trying to process this as well, and they probably grieve differently than you do. Keep in mind that denial and anger are part of the grief cycle, so you may be on the receiving end of another family member’s grief.
Be patient. You’re in this together. Enlist the help of a relationship or marriage counselor if needed.
The diagnosis can be somewhat of a relationship litmus test. But it’s not a death sentence. In the end, you may find out that some of your friends aren’t the people you thought they were. You may also discover precious new friendships that you wouldn’t otherwise have known.
5. You Cannot Do this Alone
Find support as soon as possible. The right therapists, doctors and interventions are important, but so is your mental health. It will take some time and energy, but finding other parents who have been through this is key. You need allies who aren’t related to you. People you can connect with so you know you’re not alone.
Organizations like TACA and NAA can often link you up with groups in your area. There are online groups on social media. In our office, we have a weekly group therapy meeting for parents to specifically work on their own emotional needs.
Autism can be very isolating. Our kids often function best when they are in a familiar home environment, and that tends to be a very healing place. But as a parent, you need to get out, be with others and talk about what’s happening.
And sometimes it helps just to hear someone else say, “Me too.”
If you need help navigating the newness of an autism spectrum diagnosis, contact us.
We can help.