So I know it's been a number of years (nearly 20!) since I've been there, but I remember those first scary months like they were yesterday. I'll write our story later, but today I wanted to jot down a few lessons I feel like I learned having gone through it, myself, and also having helped many other parents navigate the process.
Here are 10 lessons I learned about the first 6 months after a diagnosis (or just prior!):
#1 Don't Wait!
If you have concerns about your child's development, if you have read over the symptoms of autism or have any sort of "gut" feeling that something is not right, Do. Not. Wait. Don't let your friends tell you that their child did or didn't do this or let your doctor put aside your worries with a await-and-see attitude. If there really is something going on, you will be losing valuable time by not identifying it and addressing it. Plus, waiting lists for a full-scale diagnostic evaluation are usually very long, as long as 9 months or a year. If NOTHING else, at least get yourself on a waiting list. If your name comes up, and you are no longer concerned, you can always cancel the appointment. However, if 9 months go by, and you haven't put yourself on a list, and then you REALLY decide something is going on, then you have to wait another 9 months (or whatever it is), thus losing 18 months of critical time! So if you think any of the symptoms you have been reading about fit your child, don't wait. Talk to your pediatrician and ask for a full-scale evaluation to "rule out autism" if nothing else. That's what we did. Except for the ruling out part. They had to "rule it in." And this was 20 years ago, and we were able to get a solid diagnosis at 22 months, eons earlier than many other families at the time because we pushed for an evaluation. We had an ABA program up and running within a couple months.
Who can diagnose? Developmental Pediatricians (doctors who have special training in child development and children with special needs), Child Neurologists (doctors who work on the brain, spine, and nerves), Child Psychologists or Psychiatrists (doctors who know about the human mind). Most major cities also have a child development center at their children's hospital. These are wonderful resources. Call your local hospital and see if they have one of these clinics and if they do evaluations for autism. They can direct you. Waitlists for these are generally the longest, but worth it to at least get on a list, even if you are able to get into another doctor earlier for a less thorough evaluation.
#2 Breathe
Autism is far from a death sentence. Sure, you will have hurdles and challenges and will grieve (see #4!), but if you think about it, autism is just a different way of thinking, a different way of learning, a different way of viewing the world. It gives the world diversity! We need people who are unique. There are many examples of "quirky" brilliant scholars like Einstein who were probably somewhere on the spectrum, but it was their unusual way of seeing the world that helped enable them to expand their thinking.
Now, maybe you don't have an Einstein or a Bill Gates, you have a good, old-fashioned "run of the mill" spectrum baby who struggles in all developmental areas. That's just as amazing! You will expand your ability to love and accept and learn things that you could never have imagined. There is no way to describe what a wonderful (albeit sometimes heart-wrenching) journey you are embarking on. Embrace the love while also embracing the suck!
#3 Get a 2nd opinion
You go through the process and come out with an official diagnosis. Great. Read that report and really digest it. In the meantime, set up another appointment with someone else! Chances are, it will be another few months before you can see them. I'm not saying you suspect the diagnosis is necessarily wrong, but getting another professional opinion, reviewing a second report with their perspective and recommendations, will really solidify in your mind the direction you need to go. We actually went to THREE evaluations, and it probably wasn't until that third one that I finally said, "OK, this isn't going away." We had been doing therapy all along, but in the back of my mind, I somehow thought that just a few months of this, and our son would be magically "fixed." So, getting additional slaps upside the head really helped me embrace the path we were on.
WITH THAT SAID, do NOT wait to start on your research and getting services put in place (see #1). The way I think about it, I would rather err on providing services and in the end not really needing them than NOT providing the services and looking back and realize we should have. There is no way to get that time back. So, don't wait, but do get another opinion.
#4 Prepare to grieve. A lot.
Yes, you will go through the grief cycle when you get the diagnosis. Denial. Anger. Depression. Bargaining. Acceptance. But, to be honest, you will also probably also go through the cycle when he's not invited to the birthday party all the kids are going to, or she can't go out to eat with the family because she's too disruptive in public, or he swallows his first lost tooth and doesn't care about the tooth fairy, or she can't drive at 16 when all the other kids are, or.... or... or.... It will happen a lot. Again, embrace the suck.
The fact is, our kiddos are on a different path; it's their own path. They will get where they're going, where they're destined to go, but maybe it's a meandering path. Maybe it has a lot of dead ends. Maybe it ends lower on the mountain. That's ok! You'll figure it out. Remember it's all about perspective. Yeah, the other kids seem to have it all together, but that guy over there is not the pro football player he wanted to be, and that girl over there has really crappy parents, and that guy is just a douche bag, so, yeah. It's alright.
#5 Educate yourself and stay current and connected
There is an absolute plethora of information out there on autism and other disabilities and therapies and all that. The internet is amazing. It was barely taking hold when we got our diagnosis, and I remember I found a parent forum. It was a life-saver! The internet was also where I was able to find the term "hyerlexia" for the first time that helped describe my toddler's weird fascination with letters.
Use your resources and learn about the diagnosis, learn about the specifics of your child's diagnosis, learn about therapy options (see #7), and most of all connect with other families. You will find your current friends and family are sympathetic and caring, but it isn't until you commiserate with parents in the same situation that you really feel at home. It's amazing to go out to dinner with friends where your kid's not the loudest at the table! Or go to a friend's house and know that you can feel completely comfortable when your child wants to run from room to room looking at all the clocks over and over. Get connected! You need to change your 8-year-old's diaper? Do it right here. We certainly don't care. Need to leave early because your kid is in melt-down mode because the cheese wasn't the right cheese on the sandwich? That's fine. We'll make another playdate again soon. No pressure. They understand.
Also, stay current on the progress of research and therapy advances. Things change so fast, and we seem to be moving in an incredibly awesome direction. Keep up with it and participate in research whenever you can. Pay it forward!
#'s 6-10 coming up later this week! Stay tuned!