Five Things You Can Do If You Think Your Child Has Autism

by Tim on August 11, 2008

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.

  1. 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.

  2. 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.

  3. 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.

  4. 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.

  5. 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.

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{ 9 comments… read them below or add one }

magicdrgn August 11, 2008 at 10:12 pm

As someone else who has been there, I would definitely second (third?) all of that.

Dean May 2, 2010 at 10:29 am

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.

Dean May 2, 2010 at 10:34 am

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!”.

Jenna July 19, 2011 at 9:06 pm

This is wonderful. Thank you so much.

April Tedder December 9, 2011 at 9:18 pm

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.

Tim December 9, 2011 at 9:53 pm

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.

Granny's_lil_angel January 15, 2013 at 1:59 pm

Well my grandaughter is 13 months old and Ihavewondered from early age around 4 months if there was some disabilties or motor skills disabilty..
1. Newborn till 2months it take her over 45 mins to hour to finish a bottle.
2. She just now started sitting up on her own she still can’t pull herself up from a lying postition to sitting up , she can stand up for few mins only if leaning on the edge ofthe bed
3. Toys make a loud noise or moves while making the noise makes her scream out crying ( our garage door when it’s going up or down she screams out and starts crying)
3.when she was 3 months -till now she will stare at her hand for hours hold thm close to her face then pulls it away ( when she was
smaller use to tell my daughter it was the funniest to watch now knowing thats a sign I feel bad but i didn’t know )
4. She stares off for periods of tme or think she’s looking at you all sudden u see her head shake focaus see’s you then….
5. my oldest grandson is 7 and few months ago he was diganoised with
Hersburgar’s he is gping threw different testing now I see only he was slow in any motor skills or communcation skills .. He was tested for pre school couple years back in math reading etc….They said he was at a 4th-5th grade level then…Now he is in 2nd grade gifted class’s reads on a 7 -8th grade level ,, He’s not showing any signs that stand out thats why they are doing more test/..

6. The other night i was reading a lady’s blog her name is “Sunday” she has 2 boys that have autism my world fell apart after reading the things that lead her to getting her boys tested .. her oldest shows showed signs as a infant the way they hold there arm’s “the wave” .. My grandaughter with both her arms she has to swing them out then in with anything she does ( its like her arms had been broken not set right) hard time pick up things w/her hands..
She mentioned longs hours of sleeping , the hollering out at a high pitch, jjust recently started picking up her own food (she’s 13 months), has to have certain type material for her blanket ( she covers her head up ) .. when read the list that made “Sunday” to go get her boys tsted my grandaughter has every trait that was listed on both list… I’ve known something been wrong for awhile telling my daughter need get her to a good DR see whats wrong and one day my daughter mentioned autism and so i stated reading .. I’ve been working with her for while on motor skills (HAD PSHYICAL THERAPHY 2 times once was for almost year due to broke my elbow and arm in serveral places had to learn how to turn my hand and pick up things gain so i took that experaince did it w/my grandaughter n she uses it better ..She stays with me alot keep her during week while daughter works bu next week making at to get her tested but i know already .. But she has the most loving smile it wll brighten anyones’s day does mine everyday .. Just worry what the future holds for her but will do what every it takes to make her life as bright as she makes mine …Already I find things that work for her like with eating ,how to make diaper changing easier , getting her to stand up lean on the edge of bed ( i found alot of it is also watching her in detail how she does things that helps me develop what i do for her .. Plus reading blogs plus came acossed your name in just about all of them .. Whats amazing is I head about you “Both Hands and a Flashlight” just before she was born

Last but not least this is the most scariest time have ever had in my life

Granny's_lil_angel January 15, 2013 at 2:08 pm

Fixing a typo i made: 5. my oldest grandson is 7 and few months ago he was diganoised with Hersburgar’s ( by the school’s pscytraist) he is going threw different testing he was never had any problems with motor skills or communcation skills .. He was tested for pre school couple years back in math reading etc….They said he was at a 4th-5th grade level then…Now he is in 2nd grade gifted class’s reads on a 7 -8th grade level ,, He’s not showing any signs that stand out thats why they wanted 2nd opoinion going threw days of testing ..

Restless Hands May 15, 2013 at 4:00 am

7) If your kid does get an autism diagnosis: Learn about autism from adults on the spectrum. Experts can only tell you so much. Other parents can tell you a lot about the struggles and downsides and logistics of raising an autistic child. But ONLY an autistic person can help you understand what your child is experiencing, and how they feel about their life, and what you can do to make that life the best possible experience for them.

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