Recently I overheard a conversation in the lobby of my son’s speech therapy office. It was a phone call between a therapist and a parent who had just received the Autism diagnosis. She was trying to reassure the parent that with therapy their child might begin to speak.
Key word being "might".
There are no guarantees with Autism.
I remember being that parent and how scared and sad I was when Jacob was diagnosed with Autism at the age of two.
I only hope that this parent did not stumble upon some soul-crushingly awful article like this one from The Huffington Post. Autism is no joy ride but there are a lot more options than Valium and divorce.
With that in mind, here is my Top 10 list of things to do when you receive the Autism diagnosis:
1. BREATHE.
The diagnosis is not the end of the world. It can feel that way, but it isn’t. It gets better.
Try to think of the diagnosis less as a disability and more as an explanation and the first step is getting your child the support he/she needs. For example, children with Autism are easily over-stimulated, that is why he/she had that earth-shattering-new-world-order-building tantrum at the school carnival. I know this doesn’t make the tantrum any easier to deal with, but it does help you understand why it happened and possibly come up with strategies to avoid it happening in the future.
2. GET USED TO SOME VERY ANNOYING PHRASES.
My two least favorite are “It’s a wide spectrum” and “You are your child’s greatest advocate”. Unfortunately both of the sayings are very true and I cannot come up with a better way to phrase them.
It is a wide spectrum. What works for one child may not work for another. There is going to be a lot of trial and error. And to get those services you are going to have to advocate for your child. I mean really advocate, as in fighting with insurance companies and school administrators, quoting things like FAPE and LRE (see links below) and possibly even hiring a lawyer. Just because these sayings are true does not make me hate them any less. I still have to restrain myself from bitch-slapping any well-meaning person who spouts it at me.
3. READ.
There are a lot of great books out there. Unfortuantely there are also plenty of crappy ones too (Jenny McCarthy-did you know she cured Autism?!). My personal favorite book is Overcoming Autism by Lynn Koegel and Claire LeZebnik. It is an easy read, explains the syndrome on a wide variety of children on the spectrum and every chapter is split between an autism clinician and a special needs parent. It is also full of hope and honesty.
4. RESEARCH.
Your child is going to need services. Those services cost money. Money your insurance company and/or school district do NOT want to spend. You are going to have to learn the rules, regulations and laws pertaining to health care and education. There will be a lot of paperwork and a lot of fighting. It will be mind-numbingly frustrating. The good news is that these are battles you can win.
You can file with your state when your insurance company denies coverage. I did it before Autism insurance was even recognized and received reimbursement for a year’s worth of speech therapy (the insurance company had denied it stating that it was not medically necessary).
On the matter of education I mentioned FAPE and LRE in section 2. They are key elements of the Individuals with Disabilities Act (IDEA) and they are your friends. Free and Appropriate Education (FAPE) means your child’s education and services related to his/her education are free to you. Least Restrictive Environment (LRE) means just what it states that to the maximum extent possible your child will be educated in the least restrictive environment possible.
5. FIND OTHER SPECIAL NEEDS PARENTS.
I am sure your family and friends are very supportive, but there are times you will want to talk with someone who truly understands what you are going through. (Make sure to avoid the negative/crazy ones. Just cause they have special needs kids doesn’t make it okay for them to drag you down-be as picky as you would with other people in your life.)
With 1 in every 88 children being diagnosed, chances are, you already know a special needs parent. If not, see if there are parents at your child’s school you can befriend or start talking to the parents you meet at your child’s therapies.
And of course you can seek out other parents on Autism blogs. These connections are also GREAT sources of information. Hands down the best referrals I received where from other parents. They can help you find the great therapists, warn you away from the charlatans or let you know when they found a great program.
6. DO NOT LET ANYONE LOWER YOUR EXPECTATIONS FOR YOUR CHILD.
It is unfortunate that there are so many “professionals” that want to suck the hope out of parents. I am guessing this is part trying to save money and part ignorance.
During our first IEP meeting for Jacob, we were pushed hard to put him into a special needs class even though he had been succeeding in a mainstream preschool environment. The School Administrator even went so far as to describe Jacob as, “the weird little boy who doesn’t talk and hugs other children.” It wasn’t long after that initial meeting that we filed our first Due Process hearing.
8 years later Jacob is still succeeding in a mainstream classroom. He is also playing cello, earned a Purple Stripe belt in Tae Kwon Do and participated in this year’s Science Fair. He still needs support, but he has come a long way. There is not a day that goes by that I am not thankful we did not listen to that bureaucrat.
7. SPEND TIME WITH YOUR SIGNIFICANT OTHER. This doesn’t have to be a weekend away or a romantic dinner (but wouldn’t that be nice?). Make time to be alone after you get your kid(s) to sleep. Even if it is just to sack out and watch TV together.
8. IGNORE THE HATERS.
The Michael Savages of the world who publicly state that your child does not have a disability, they are just brats and you are just a parent. Those people are worthless assholes. IGNORE them. They are not worth your valuable time.
9. GIVE YOURSELF A BREAK.
You did not cause your child’s disability. I don’t care what the latest clinical study says, your child does not have Autism because you ate tuna, gained weight, flew on a plane or whatever other ridiculous hypotheses they come up with. Along the way, you are going to make mistakes. Just remember that if the leading doctors and clinicians worldwide are not sure of the most effective remedy for Autism, then you cannot be expected to either.
10. DON’T LET AUTISM RULE YOUR LIFE.
This is for your child as much as yourself. Yes, Autism will affect your life profoundly but take time to enjoy life and to enjoy your children. Watch a movie, go to the park, do a tickle fight, whatever it is that makes your kids smile will make you smile.
That is one thing I can promise!
