Far and away, the most popular post we’ve had is “What’s Your Autistic Toddler Like?” – the one that lists the specific autistic ‘traits’ or ‘symptoms’ our son has and to what degree. After talking to other parents, the reason why that post is so popular is abundantly clear – parents are afraid and want to know for sure what’s going on. We know; we’ve been there.
With it coming out this past week that Britney Spears is concerned that her son is autistic, the awareness to the issue that brings makes it seem like a good time to cover some steps you should take if you are concerned that your child has autism. There are more than five, of course, but based on our experience, here are some good starting points people either suggested to us or that we wish they had in the midst of all of our confusion.
A few notes first:
1. We are by no means authorities on this subject. This is no substitute for professional advice and your own common sense and expertise about your own child.
2. I know we have some readers outside the U.S., but honestly I don’t have a clue how your local, state, and national governments provide services. Some of this will still apply to you regardless. We’d love input from our readers in other countries.
3. This is primarily geared toward parents whose kids are under age 3.
OK, on with the list.
- If you are concerned that your child has autism, don’t let people dismiss your concerns. And don’t talk yourself out of them because you think you’re imagining things or you’re afraid of what you’ll find out.
Fear, doubt, and anxiety are a natural part of this process. The most important things at every step are to trust yourself as a parent and do what you think is best for your child. You know your child better than anyone; trust your instincts. Then act on them.
- Complete the M-CHAT questionnaire. (Diana Robins, PhD)
The M-CHAT (Modified Checklist for Autism in Toddlers) is one of the best clinical instruments out there for getting an initial sense of whether your child MAY be on the autism spectrum. ‘Failing’ the test doesn’t mean for sure that your child is autistic, but it will provide a means of getting an unbiased sense of where your child is at. Important Note: This test is validated for children between 16-30 months old. If your child is older, I’d still look at it. If your child is younger, it’s going to be awfully hard to know anything with much certainty, but it still gives you a lot of issues to be aware of as your child develops.
- If the M-CHAT confirms your concerns, contact your pediatrician. Even if it doesn’t, if you’re still concerned, talk to your pediatrician anyway.
Make an appointment, go over your concerns, hand them your completed M-CHAT, and come up with an initial plan. Regardless of whether your pediatrician is otherwise helpful or not, walking out of their office with some referrals is important. Note how supportive and informative the doctor is, and remember that. You’ll want to know whether they are going to be a helpful member of your team or in need of being replaced with a pediatrician who can be.
Even if the M-CHAT tells you your child likely isn’t autistic, your child may have delays that need to be addressed, and your peds can help you do that.
- If your child is under three, what you want to walk out of your pediatrician’s office with is a referral and all the information you can carry about Early Intervention (EI). Better yet, your pediatrician will help you set up an initial appointment with EI.
Early Intervention is absolutely essential if your child is under age 3, which is the age group they serve. They will help you make connections with the evaluations and services that will help your child based on their needs. They can also help you financially to be better able to afford those services. Early Intervention was one of the most critical parts of our last two years. It’s hard to overemphasize this.
At this point, you aren’t going to get a diagnosis of autism. That will require much more significant levels of evaluation before you can state one way or the other whether your child is ‘on the spectrum’. Early Intervention is there both to help you figure out what’s going on and to get the services your child needs from there.
While you can contact EI directly, it will help and relieve a lot of stress off you from navigating some inevitable bureaucracy if your pediatrician gives you the referral. It also may make some insurance issues easier later.
Note: If your child is over three, your local school system should be your next step. They are responsible for providing evaluations and services for people between ages 3 and 22 under the U.S. federal IDEA (Individuals with Disabilities Education Act) law.
- Keep enjoying every day with your child, focus on where they are, and love them with every fiber of your being.
It’s easy to get so focused and worried about a diagnosis that you lose sight of the most important part of all this – your child and the unique gift they are. We have found that it is easy to get so caught up in therapies and doctor’s visits and evaluations and preschool meetings that we forget to just enjoy each other and our time together.
This may turn into a marathon, so learn to pace yourself. I think the best way to do that is to reconnect every day with your child, the amazing gift they are – regardless of diagnosis – the love you have for them, and the importance of your family. This will be the energy that sustains your family’s journey through whatever comes next.
There are obviously more steps to take, but I stopped here because it’s so easy to get overwhelmed by the enormity of this. You will end up reading a lot (that’s for another post), talking to numerous people, and getting more advice than you can stand, on top of everything else.
I will give you a bonus thing to do – don’t automatically accept what someone says just because they said it. As soon as you express your concerns about your child out loud, it seems everyone has an opinion and everyone has advice on what to try. Some of it is helpful, some of it is annoying, some of it is outright ridiculous. One of the hardest parts of this journey is figuring out which is which.
It’s not about whether you ‘get it right’ or think you screwed up, it’s about helping your child grow into the best little person they can be and loving them through every step of it. You’ll be afraid, you’ll cry a lot, and you’ll have days where you feel hope slipping away. You’ll also have days of pure joy, you’ll feel awash in pride for each of your child’s accomplishments, and you’ll realize that nothing else you discover will change how much you love your child.
If you discover your child is on the autism spectrum, your life will be different than if your child isn’t. I’m not telling you some surprising truth there. The day we found out felt like the end of the world.
But as Rachel Coleman from Signing Time sings in her song The Good, “So maybe we won’t find easy, but, baby, we’ve found the good.” And so we have.
If you want to ask us questions, by all means do. We can tell you at least what we know and have learned. Just know that whatever happens next, there’s always a support network – either locally or on the Internet – out there to help you.
Posts that hopefully are similar:
- Three letters that change your life
- Big IEP/Preschool Evaluation Now Behind Us
- Is “Asperger’s” on the way out?
- The Clinical Definitions of Autism, Asperger’s, and PDD-NOS
- There Are No Shortcuts – Ideas For Making Better Therapy Decisions
- Down the Home Stretch with the IEP (We hope)