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.
Direct Links: M-CHAT form (PDF) | M-CHAT – Automatic Scoring Version (Microsoft Excel file) | M-CHAT Scoring Instructions | M-CHAT Scoring Template
Of course, do read Dr. Robins page first before plowing into this. Also, don’t forget to visit First Signs and the other links she lists.
- 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:
- Big IEP/Preschool Evaluation Now Behind Us
- The Clinical Definitions of Autism, Asperger’s, and PDD-NOS
- Revisiting Milestones – Speech, Language, and Reading
- Down the Home Stretch with the IEP (We hope)
- A-Day
- Is “Asperger’s” on the way out?
- Three letters that change your life
{ 6 comments… read them below or add one }
As someone else who has been there, I would definitely second (third?) all of that.
6. Learn the difference in how an autistic adult responds to the statements “person with autism” and “autistic person”. One of these phrases implies autism as a condition separate to the person, like a cancer to be excised. The other indicates that autism is an inherent part of that person and their character.
I often tell people I know to compare their statements about autism to their racial equivalent, and the quality of that statement soon becomes obvious. I once wrote to a government who in a letter told me about an initiative called Helping Children With Autism that I sure hope they would not create an initiative to help Aboriginal children out of drug-consuming, drunken, or abusive households, and call it Helping Children With Blackness.
Oh yeah, and Britney should learn that sharing your child’s psychological/medical concerns with the media is rarely, if ever, a good idea. I can just picture if my mother had made a career out of singing like she could have done: “Help! My son is reading at an age where his peers are still banging pots and pans together!”.
This is wonderful. Thank you so much.
My two year old is displaying some behaviors or traits that I believe may be Autistic in nature. Such as; repeating Mmmmmm while rocking and bouncing off the back of the couch. He does not say more that 5 words and the words he says are Ba-ba, num, Mama, Dada and oh. He hardly makes eye contact and when he does it’s for a very brief moment. He very almost never responds to his name nor does he respond to people when they speak to him. He has absolutely no hand gestures what so ever. There are days when I have almost been positive that there was a learning disability involved and then others I think to myself that I’m nuts. I made an appointment with his doctor, but I’m almost scared to know the truth. If anyone has any other advice I would appreciate it greatly.
April – I’d recommend filling in the M-CHAT questionnaire (link near top of this post), seeing what it says, and taking that to the doctor. If you get the brush off from the doctor or information you’re not satisfied with (the following assumes you’re in the U.S.) then your local Early Intervention (which the doctor should know the contact info for) and also your school system are obligated to provide evaluation services. Given your concerns, you will probably end up with an evaluation by a child psychologist. (Make sure they are qualified!)
Process-oriented stuff now out of the way, let me say this. I know this is really, really scary. We dreaded every eval and were terrified of what they would say. It didn’t help that our first evaluation team had a complete idiot as one of the three evaluators. This is a really emotionally wrenching time. You are not alone in having felt this terror. You’re definitely not nuts. This is a very uncertain time.
I don’t know whether your son is autistic or not. If nothing else, the types of therapies that he may need probably won’t be much or any different right now regardless of what his diagnosis may or may not be. There are things you can start doing immediately like speech therapy and having someone talk about his possible sensory issues with you.
But if he is autistic, I will tell you the two things a couple of people told me back when I was where you are now. If you do get a diagnosis, he will still be the same beautiful, wonderful boy he was before. And, you will be OK. You may be scared mute about this and have no idea what you’ll do if he is diagnosed with autism, but you will make it. It will not be easy, but the strength and the community of support you need will be there.
Hang in there. Let us know how the evaluations go. Wishing you, your son, and your family our best.