So the diagnosis is now official. An expert has confirmed your suspicions. Your child has autism. You’re shocked even though you kind of already knew, or else why would you be getting a specialist’s opinion? Still, you were hoping your gut instincts were wrong. They weren’t. So what’s next?
In our case, 11 years ago, the doctor was kind and sympathetic, but his “verdict” came at the end of our appointment time, so my husband and I had just a few minutes to process things, ask a few questions, and accept a folder with some information that would supposedly get us started on our new journey. But the “verdict” felt like a “sentencing” of some kind. And the folder didn’t contain nearly enough information to help us at all. It felt like a kind gesture, and that was it.
What we did come away with was a sense of urgency, that we had a small window to really help our three-year-old son with therapies and whatever else we could find. At the time, we had just moved to Boise, Idaho, having left the Salt Lake City area, where our son was born and where much of our extended family lived. We knew very few people in our new neighborhood, but we were blessed to have my husband’s cousin in the area, who happened to be a well-respected OBGYN. He called in a favor and got us in to an overbooked pediatrician who happened to be his neighbor and long-time associate in the field of childcare.
Our new pediatrician was amazing! She knew about autism–a lot. She was also compassionate and very thorough. We loved her immediately! Her office happened to employ an early-intervention service coordinator. We loved her right away too! But even with both of their help, we still felt overwhelmed and had a lot of research and decisions to make. Thankfully, our son was an only child, and I devoted any time he needed to therapy and “homework,” practicing the skills he learned in therapy.
Looking back, I can see we were truly blessed to find the right people to help us. We continued to find good therapists who helped our son with occupational therapy (OT), physical therapy (PT), and speech therapy (ST). We added adaptive sports, equine therapy, and an early-intervention preschool, which he attended a few hours a day for two years before kindergarten. He entered elementary school. He qualified for an Individual Educational Plan (IEP) and for Educational Resources in mainstream classrooms. Every single therapist, teacher, and trainer did their very best to help our child. And we did everything they told us to do at home.
Fast forward 14 years and I can see that in many ways our situation was ideal for raising a son on the spectrum. Granted, some things were not. Living away from home was tough at times, but living in the Boise area brought many opportunities we wouldn’t have had in Salt Lake City at the time. (I’ll explain more in another post and link it here.)
The condensed version of our story is about as short as I can make it here. But I do have a few tips to share, things we learned along the way. When you first get the diagnosis for your child, you might note the following (after you have a good cry and eat some chocolate first):
- Read positive research. One of the first things you’re likely to do, if you haven’t done so already, is scour the internet for information. Please be very careful about how you do this. Many articles can be so negative and full of inaccuracies. Commit to reading only information that is research-based from trustworthy sources. I suggest starting with sites such as AutismSpeaks.org or NationalAutismCenter.org. “Knowledge is power,” right? Arm yourself with correct information first. Also, begin researching what’s available in your state. Consider asking a partner, family member, or friend to help you. There’s a lot of information out there, good information. But don’t overwhelm yourself with information that applies to other states or countries. (More about that in number 5.)
- Study positive examples of people with autism. Yes, positive experiences do exist. Before beginning our journey with autism, we had never heard of Temple Grandin. We were delighted to find out about her and hope to meet her in person one day. She’s uplifting and positive, yet a bit quirky. So she’s real. 🙂 Most importantly, she is living proof that an individual with autism can accomplish amazing feats. Dr. Grandin isn’t the only fine example. There are many others. Focus on them, not the scary examples.
- Avoid books that promote unresearched, personal beliefs or are just plain whacko. Back when our son was first diagnosed, Jenny McCarthy made her autism debut, doing more harm than good, if you ask me. If you choose to read her books, be forewarned that Ms. McCarthy is rude, biased, and stubborn regarding many of the latest scientific findings on ASD. Her example is problematic, in my opinion, because she influenced many Autism Moms to think that they have to speak and act like her to get necessary results for their kid at school and in the medical profession. The result? No one wants to work with the Jenny McCarthys of the world. Don’t ruin your chance to be your child’s best advocate by following her example. Also, I don’t recommend reading Running with Scissors. It’s full of horrible language and disturbing thoughts. It also had no application whatsoever to our situation. Several people recommended that book to me when our son was first diagnosed. It was a terrible suggestion. Thankfully, there’s a much better selection of autism-inspired books now available. (Future post of good book selections to come.
- Make sure your pediatrician is well versed with autism. Ask them how much experience they have with autism. Do they enjoy working with patients on the spectrum? How many autism patients do they typically see? Have they received specialized education or training for treating autism? Listen to your gut feelings when they respond. Also, see if their office has a social worker or service coordinator who can help you. This is generally a complementary service. If your current pediatrician doesn’t have someone on staff to work with you, contact other pediatricians in your insurance network regarding their services specific to autism. Change pediatricians if yours isn’t highly educated on autism or enthusiastic about helping you.
- Research local community and school district for options. In our case, Utah offers an Early Intervention program, which we began utilizing when our son was a year old. That’s when we noticed gross-motor delays and sensory issues. Then when we moved to Idaho, we sought the official diagnosis and received referrals for autism-specific programs. Some information came from the doctor. But I also researched a ton online. This is the time to put your best Google-search tactics to use. Simply type in autism plus the name of your town or school district. Options will come up. Some possibilities include behavioral therapy, physical therapy, occupational therapy, speech therapy, and more. You’ll need referrals from your pediatrician to see these specialists. Usually, there are waiting lists. Don’t be discouraged. Get your child’s name on ANY lists you might need. People cancel their spots, and you’ll get in. If you end up not needing a therapy when it becomes available, you can always cancel. So FOR SURE get on the lists, and don’t delay.
- Know that there are solutions. Do NOT assume that you cannot afford help for your child. If there’s a therapy that’s right for your child, you should check into it. Insurances help to cover expenses, Medicaid might be a resource, and some places have reduced fees for those paying with cash. Honestly, if you are in a total financial pinch and truly cannot afford help for your child, you should qualify for some kind of assistance. At the very least, set up a GoFundMe account and seek help from family and friends.
- Join local support groups. While waiting for therapy appointments, visit with the other moms in the waiting room. Or find support groups by searching online or asking your pediatrician or the therapists you see. From my experience, moms are the best resources for learning about community resources and competent medical professionals. That said, if someone has an unfavorable opinion of a service, you might want to probe a little and ask why or what happened. You may learn that their concerns are very different from yours and that the service really would be right for your kid. Or you’ll agree with the mom’s assessment and save yourself a big headache.
- Ask for ideas in Facebook groups. I say this with extreme caution. I participate in several autism FB groups. Be careful and specific about what you ask, realizing that the members may offer unintentional misinformation that simply isn’t right for your situation. I recommend starting with local autism Facebook groups first. Otherwise, someone’s advice from Kentucky or the UK, for instance, may send you down the wrong track for your state’s options. Instead, begin by searching your state + autism, and see what comes up. Then you might post something like, “We are looking for a pediatrician near Salt Lake City who is very knowledgeable about autism. Can anyone here recommend someone and tell why you like them?” With any luck, a good physician’s name will be recommended more than once. Then you can feel good about calling him or her. Or “Our son needs physical therapy. Can you recommend someone in the Salt Lake area who works with autistic kids?” Avoid questions like, “My son is 6 and struggles to kick a ball. Do you think he needs physical therapy?” You’re going to receive every opinion under the sun, and all the myriad responses will likely leave you feeling confused. Also, I highly recommend that you don’t use Facebook groups to vent. Seek trusted friends for that. Otherwise, you’re opening yourself up to a bunch of strangers. I’ve discovered that women in these groups LOVE to vent. They don’t necessarily want to fix problems. They just want to vent. And if you suggest solutions, they’re going to snarl at you for “judging” them because you see a probable answer. Yes, I speak from personal experience on this one. 🙂 Also, venting ladies aren’t exactly positive people. I find most of the autism FB groups to be quite negative.
- Don’t worry what family and friends think about the autism diagnosis, unless they happen to agree with you. I know. Easier said than done, right? With time, all of our family members have come to see that our son is on the spectrum. Had we waited for everyone to be on board with the diagnosis, we would have lost years of precious early intervention. Lovingly explain that you’re getting help for your child, and if the “label” of autism makes them feel uncomfortable, then you acknowledge that. They have a right to feel that way. In turn, you ask that they acknowledge that you feel otherwise. You’re with your child all the time. Your child is your focus. You’re doing your best to get the help and resources you need for your child. And . . . medical professionals agree with you. So unless they’d like to get on board the autism boat and help you row, they should be kind and support you and your child in what you need to do. At the very least, you ask that they please don’t insist that their assessment of your situation is right. You simply don’t have the energy or emotions to deal with that too.
There’s so much to consider when THE DIAGNOSIS is first given. These are just suggestions to get you started. Everyone’s experience with autism is unique. Every person with autism has their own set of experiences. Hopefully, you’ll see here that there are ideas to try. There are possible solutions. There’s more than just a diagnosis. There’s hope.
What did you do when you first learned you or child have/has autism?