Our daughter’s initial developmental evaluation was honestly one of the toughest days of my life. She has severe, classic, (I say pre-verbal) autism… and she’s absolutely incredible. She is perfectly and unabashedly herself, and she has become one of my greatest teachers. Things are not anywhere near as scary or as daunting as they seemed in the beginning. Here are a few things I would tell parents of newly diagnosed autistic child:
Listen to me. It’s going to be OK. You’re going to be OK, and your child is going to be OK. I promise. Nothing has changed from when you walked in that evaluation room. He/she is still the child you’ve known all along, and you’re still you. The official diagnosis will only help you obtain the services that your child needs. I know it’s overwhelming right now but just breathe – take it one day at a time (one minute at a time if you need to!). Everything will be OK, and it WILL get better.
2.) Research Your Options
You may hear that one specific therapy is the end-all, be-all way to help your child – they have to have that therapy (whatever that may be) or you’re not doing all that you can for them. The truth is…there are many different options out there in regard to what types of therapy you can try with your child. All autistic children are so incredibly different, so therapy options are definitely not a “one size fits all” approach. It’s also extremely important to read articles by (and talk to) autistic adults as well. Ask them about their previous experiences with therapy – ask what impact it had on them and how it made them feel. They’re an invaluable resource. PS: Don’t listen to anyone who tells you that your child cannot or will not be able to do something. No limits!
3.) Love, Accept, Support Your Child
This sounds like an easy one but you need to do all of these things for your child….. love them, accept them, and support them….as they are this very minute. It can’t be contingent upon whether or not they’ve hit specific milestones. I beg you not to spend your time mourning for the child/life that you may feel you “should have” had. I know it’s hard – but if you live your life that way – you will miss out on the beauty of everything you have right now! Plus, our children pick up on everything: your body language, your vocal/tonal inflections, the way you feel, how anxious you are, etc. Even if we don’t communicate by speaking to one another – I promise you that our Little Lady knows that she is incredibly (and unconditionally) loved.
4.) Always Presume Competence
Listen…I know there are a lot of times when they’re not looking at you, and/or don’t appear to be paying attention – however, it is more than likely that they are. They’re constantly taking everything in. If your child is non-verbal, please don’t assume they don’t understand what others are saying, because again: chances are that they do. I talk to my daughter like I would any typical child her age. I ask her about her day, we talk about things I’ve heard she did at school that day, etc. She may not be able to answer yet but I know she understands. I believe it’s better for them to always set the bar too high rather than too low. Chances are they’ll surprise you when you least expect it!
5.) Create a New “Normal” For Your Family
Take all of your pre-conceived notions of what your holidays, outings, and “typical day” in general should be…. and throw them out the window. “The Key to Happiness is letting each situation be what it is – instead of what you think it should be”. I love that quote, it was given to me by our Sooner Start therapist (who is now a part of our family). It’s so incredibly true – disregard tradition and create a life that works best for you and your family!