Getting an autism diagnosis is an emotional process and for someone who knows little about autism it can be scary. You go from being the person who knows your child better than anyone to the person who is being told in every direction what you need to do for your child no matter what you know. I remember feeling at the time like an autism diagnosis meant they all knew him better than me, and that was just simply not true. I had filled out endless paperwork, watched his skills be put to the test, listened to strangers tell me his faults and how much he lacked to keep up with kids his age. I had strangers coming into my home telling me what to do with my own child based on his difference and yes they were there to help but I think back to that time and there are some things I wish someone would have said to me. Things not taught to specialists or part of a autism training program for advocates. So today I am going to list the things I wish I would have been told during the process because they truly have affected life since and it matters to someone going through the diagnosis process.
1. It's not the end of the world! It is however the end of the world you knew and you have already been introduced to it. Now you have been given a label for it and that comes with instructions. Even then, the instructions won't always work so don't get frustrated when it doesn't apply to your child. Do what works and it might take time to figure that out.
2. If you think you are a patient person, you are going to need to learn a level of patience you had no idea you were capable of. It is about to become a superpower and it's necessary.
3. People might blame you, people you never thought would and your about to learn who is strong enough and who is not and the clarity might shock you.
4. Not everything is a side effect of autism. Pay attention some things will seem to intensify autism but many doctors will treat you as though autism caused it. Research is about to become your late night hobby for a while. Gut flora, look it up because a probiotic is going to bring your child a ton of relief.
5. Your never going to find a cause, at least not one particular one and no matter what you think caused it in your child's life it will be different for everyone. Respect that and carry on.
6. You are going to learn more about food than you ever thought you would and your also going to throw a lot of it away. Your entire perspective on food is going to change because much of the food you have been eating most of your life is toxic. Get ready, your going to fear food for a while until you learn what's good and what's not. On the other hand you might give your child cake for dinner if that's all that will be accepted that day.
7. Your social life....don't get your hopes up. It was limited before and since some people will shy away from an autism diagnosis and stop helping you, it might get even more limited for a while.
8. Eventually you meet an a lot of people who understand and offer you enormous support. 99% of those people will live in your computer. It will be the one time in your life you are eternally grateful the internet was invented.
9. If your child reacts badly to a therapy or therapist immediately, follow your instinct and not the demands of the people who want your insurance card before your opinion or input.
10. Listen to yourself talk. Your child hears everything you say and understands it. Treat your child exactly that way even if it just doesn't seem that way most days. Look up Carly Fleischmann and she will show you this.
11. Your child might not be an all star baseball player or be the quarterback on his high school football team. Dad thinks about this more than you and moms and dads have different concerns. It might seem silly but every concern matters and needs to run it's course with understanding.
12. Potty training....see number 2 (on the this list) it's not going to happen in a toilet as easy as you would like it to. You can try to force it but I wouldn't recommend that or it may take even longer.
13. Your child is going to surprise you over and over again. Be ready for those moments you were told might not happen because they might. Expect it over time even if it's the smallest moment to another, it will not feel small to you!
14. No one knew your child as well as you before the autism diagnosis and after the diagnosis that does not change. In fact you might notice just how aware you are and your child will cling to you as though you are what eases the world. It's OK to step away when you are given the chance because you are important! You will forget that from time to time.
15. Not every behavior is autism related. Lately when my child goes outside to play he rushes to the kitchen to grab a cucumber. He will not go outside without one beginning 4 days ago. Is he displaying odd behavior? Yes, and it may just be he is preparing to battle pirates and a cucumber is his weapon of choice. He is a child before he is autism.
16. Do not compare your life with anyone else's. That parent at the grocery store with a child who is totally compliant and sitting perfectly in a cart? There is more to that parents life than that moment. They have thier moments and you have yours, remember that.
17. Purchase comfortable shoes. Your going to be moving a lot. Your feet and your mind are not going to get very much rest!
18. I was trying to get to 20 with this but 18 will have to end it. So, last but not least keep this in mind every day when it gets hard. No parent has ever given birth, held a new life in their arms and said "This is going to be so easy. I know exactly what to expect and it's all going to go my way!"
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