Several years ago I also turned to the Internet to try to find answers—a definitive and resounding NO or YES (as it turned out)—so I would at least know what I was dealing with.  (Or so I thought!) 

Some of the behavioral “quirky-ness” my son demonstrated included:

·         Walking on his tip-toes practically all of the time.  He had extremely well developed calves for a toddler!

·         Flapping his hands and jumping up and down, inexplicably

·         Chewing on things constantly, things that a child should not be chewing on, such as furniture

·         Poking himself in the eyes (this one terrified me)

·         Extreme sensitivity to light and wind (making going outside very unpleasant)

·         Fear of the vacuum cleaner and hair dryer—I’m talking real panic

·         “Combat crawl”, as if he was in bootcamp going under a low row of barbed wire, rather than a typical on-all-fours-crawl

·         Wanting to do the same thing over and over again for hours on end

·         Not responding to me when I call his name

Oh, there were many other things, such as language delays and so on but the behaviors above really concerned me and started my quest (online at first) for answers.  You can read all the details about our personal autism story and how we got the diagnosis of autism on my son’s website.

It was relatively quickly that I came across the CHAT, or the Checklist for Autism in Toddlers.  While I must include the disclaimer that this is not medical advice and you should never diagnosis yourself or someone else, when I found the CHAT that pretty much sealed the deal for me and my husband.

As a rule, your pediatrician should do a cursory run-down of the CHAT for your child when he or she comes in for his or her 18-month old wellness visit.

The checklist is broken into two sections.  The first is the list of questions that your pediatrician should ask you.  The second section results come from your doctor’s observations of your child.

The content of the checklist is as follows:

Section A - Ask Parent:

Yes or No?

____ 1) Does your child enjoy being swung, bounced on your knee, etc?

____ 2) Does your child take an interest in other children?

____ 3) Does your child like climbing on things, such as up stairs?

____ 4) Does your child enjoy playing peek-a-boo/hide-and-seek?

____ *5) Does your child ever pretend, for example, to make a cup of tea using a toy cup and teapot, or pretend other things?

____ 6) Does your child ever use his/her index finger to point, to ask for something?

____ *7) Does your child ever use his/her index finger to point, to indicate interest in something?

____ 8 ) Can your child play properly with small toys (e.g. cars or bricks) without just mouthing, fiddling, or dropping them?

____ 9) Does your child ever bring objects over to you, to show you something?

Section B - GP’s observation

Yes or No?

____ i) During the appointment, has the child made eye contact with you?

____ *ii) Get child’s attention, then point across the room at an interesting object and say “Oh look! There’s a (name a toy)!” Watch child’s face. Does the child look across to see what you are pointing at?

NOTE - to record yes on this item, ensure the child has not simply looked at your hand, but has actually looked at the object you are pointing at.

____ *iii) Get the child’s attention, then give child a miniature toy cup and teapot and say “Can you make a cup of tea?” Does the child pretend to pour out the tea, drink it etc?

NOTE - if you can elicit an example of pretending in some other game, score a yes on this item

____ *iv) Say to the child “Where’s the light?” or “Show me the light”. Does the child point with his/her index finger at the light?

NOTE - Repeat this with “Where’s the teddy?” or some other unreachable object, if child does not understand the word “light”. To record yes on this item, the child must have looked up at your face around the time of pointing.

____ v) Can the child build a tower of bricks? (If so, how many?) (Number of bricks…)

* Indicates critical question most indicative of autistic characteristics

There is also another widely-used autism symptoms checklist called the M-CHAT, or Modified Checklist for Autism in Toddlers.   The M-CHAT is validated for screening toddlers between 16 and 30 months of age, to assess risk for autism spectrum disorders (ASD).   This screening tool contains an autism symptoms checklist of twenty-three questions to be answered by the parent.  The questions are all yes or no and the complete list follows here:

1. Does your child enjoy being swung, bounced on your knee, etc.?

2. Does your child take an interest in other children?

3. Does your child like climbing on things, such as up stairs?

4. Does your child enjoy playing peek-a-boo/hide-and-seek?

5. Does your child ever pretend, for example, to talk on the phone or take care of a doll or pretend other things?

6. Does your child ever use his/her index finger to point, to ask for something?

7. Does your child ever use his/her index finger to point, to indicate interest in something?

8. Can your child play properly with small toys (e.g. cars or blocks) without just

 mouthing, fiddling, or dropping them?

9. Does your child ever bring objects over to you (parent) to show you something?

10. Does your child look you in the eye for more than a second or two?

11. Does your child ever seem oversensitive to noise? (e.g., plugging ears)

12. Does your child smile in response to your face or your smile?

13. Does your child imitate you? (e.g., you make a face-will your child imitate it?)

14. Does your child respond to his/her name when you call?

15. If you point at a toy across the room, does your child look at it?

16. Does your child walk?

17. Does your child look at things you are looking at?

18. Does your child make unusual finger movements near his/her face?

19. Does your child try to attract your attention to his/her own activity?

20. Have you ever wondered if your child is deaf?

21. Does your child understand what people say?

22. Does your child sometimes stare at nothing or wander with no purpose?

23. Does your child look at your face to check your reaction when faced with something unfamiliar?

As far as scoring the M-CHAT, the instructions for this list state that children who fail more than 3 items total or 2 critical items (particularly if these scores remain elevated after the follow-up interview) should be referred for diagnostic evaluation by a specialist trained to evaluate Autism Spectrum Disorder (ASD) in very young children.

Again, there is a huge disclaimer here—do not self-diagnose and do not get alarmed or panicked.  If your child is not meeting milestones, print out this post and score it on a separate piece of paper.  Then ask another adult close to your child (the other parent, grandparent, or care giver) to go through these questions and score separately.  If, after going through these with adults that know the child best and there appears to be some warning signs or some symptoms that aren’t typical, make an appointment with your child’s pediatrician.

When you take your child to see the doctor, bring both lists and the scores that were completed by you and the other parent/caregiver.  This will provide the basis for an initial discussion with your doctor regarding your child’s ultimate diagnosis, whatever that may be.  I have helpful information for finding a good pediatrician on my son’s website and have linked to it here.

All the best to you and your family and if you have any questions at all—or comments—please email me or leave your comments here!

It’s difficult to think back to the pre-diagnosis days.  Have you ever been stopped in mid-conversation to explain a word that you don’t give a second thought to?  I know I have.  It seems there is an entirely different language among the Autism Parents versus the Neurotypical Parents. (Neurotypical being one of those post-diagnosis words!)  Remember when we were all just Parents?   

Here are some other vocabulary words introduced to me through Autism:

• Stimming
• Biomedical Intervention
• Methylation
• Probiotic
• Oxylate
• Casein
• Gluten
• Chelation
• Proprioceptive
• Hippotherapy
• Pica
• Perseverate
• Echolalia
• and of course, neurotypical

As far as the abbreviations and acronyms–ABA, RDI, PDD-NOS, SLP, OT, DT, IEP–there are just too many to list!

Happy Autism Awareness Month!

1. “Don’t bite the truck”

2. “Stop growling, please”

3. “Don’t bite the bed”

4. “No chewing the table”

5. “Stop poking your eye”

6. “No spinning”

7. “No barking”

8. “No licking the windows”

9. “No licking the fireplace”

10. “No mouth on [fill in the blank!]”

11. “Socks go on your feet”

Well, hopefully those of you who have kids on the spectrum can appreciate some of these and had a little chuckle. Those of you without kids on the spectrum have no idea!

Of course, it didn’t start out that way. Growing up, I loved the 4^th of July—it was right up there with Halloween as one of the “fun” holidays. It was a chance to see friends that you didn’t get to see in the summer, ride carnival rides, eat great food that you only get once a year in Coal City, Illinois—like corndogs and funnel cakes. And the best part, the fireworks. I loved them and would watch the entire show in wonder, even up to the time I was a young adult. They mesmerized me.

Yes, 4^th of July was the epitome of what summer should be and I couldn’t wait for it to arrive. These days, however, it’s quite a different story. I haven’t even been to a live fireworks show since my oldest son, Dominic was born in 2001. I do miss that part of my life and I miss the fact that my children (well, Dominic at least) won’t share those happy childhood memories. It’s a reminder of how life is different when you have a child on the spectrum. And it is a little sad. Well, it is for me anyway.

I suppose these feelings are compounded by the fact that my younger son turned four years old on July 3^rd. He is also robbed of the wonders of 4^th of July—for now. I am already planning on taking him next year and I know he will love it as much as I have. He is a typical little boy and so curious and inquisitive. He marvels at the little things in life and I am planning that he will be my little fireworks buddy.

For those of you who don’t have a child with autism, PDD-NOS, Asperger’s, or sensory integration disorder, many kids on the spectrum are hyper-sensitive to loud noises. Not only would a fireworks display not be enjoyable, it would be pure torture for many kids. Now, I’ve never actually taken Dominic to see fireworks and visually, I do think he’d enjoy it. But trivial household tasks like grinding the coffee, drying your hair, or vacuuming, causes Dominic to scream and have a “meltdown”. So, I don’t think that I would ever subject him to the likes of fireworks.

I’m sad that he doesn’t find joy in the things that other children do. But he is happy with other things and overall he is a very happy—albeit quirky—kid.

My oldest son, Dominic, was diagnosed with Autism nine days before his second birthday. But my husband and I had long had suspicions that something was not quite “typical” with Dominic even before we had the label of Autism to attach to it. Unlike so many autistic children who develop typically and then suddenly seem to regress in their development somewhere between 16 and 32 months of age, Dominic did not meet his developmental milestones. Even as an infant, he was, well, “quirky”.

Unlike most infants, his eyes did not follow his parents as we walked across the room. He did not turn his head in our direction when we called his name. As a matter of fact, we suspected hearing problems at first. I relate the story of those early indicators and our experiences with his behavior here in my blog and at my original site, My Autism Story. You can read more about those things there. But my focus in this article is how parents deal (or don’t deal) with the emotional turmoil that you are never prepared for once you receive that diagnosis of Autism.

I am not going to sugar-coat this. Those of you who have been through it and are going through it know that hearing the words, “your child has Autism” is devastating. Of course, like all things in life, you and your family will adapt and will enjoy life and marvel at your child. But you will have many bad days to go through to get to that point. You will have difficult days. They will be physically challenging. If you have other children, you will feel tremendous guilt over things like quality time, going places, inconsistent discipline, and so on.

I also hope that friends and family will read this article, because it will shed light on what you are going through. Perhaps email it or print it out and distribute it among your family members so that they can be sensitive and better understand what you are going through. It’s been my experience that your family has the very best of intentions, but don’t always do or say the right thing.

When I was pregnant with Dominic, my first child, I shared with my husband a fear I had that the baby wouldn’t bond with me. Of course, he said that was ridiculous and it may be the stress of being a first time parent and all of the unknowns that come with it—would I be a good mother? Then, two years later came the diagnosis of Autism, characterized in part by deficiencies in social interaction and relationship building. I was crushed. Selfish? Yes. But very real nonetheless and I am sure that other parents–if they are being honest with themselves—felt exactly the same way. How can it be that I could give birth to a child that may never love me? At least, that’s what I thought at the time.

I am happy to say that this could not be further from the truth! My son is extremely affectionate. As a matter of fact, much to his father’s dismay, he is a true “Mama’s Boy”. Now, I am not saying he is cuddly and snuggly all of the time. He picks and chooses those times and when he does, I revel in them. Those times are even fewer and further between for his dad, unfortunately. We don’t know why. It just is. I know it saddens my husband. Dominic does not spare his feelings. I am the clear favorite, no doubt about it. For what it’s worth, we have a nontraditional home because I work full time and my husband is a stay-at-home parent. I have also traveled extensively for work, so Dominic spends much more time with Daddy than with me. This only adds to my husband’s frustration and hurt feelings. Even though he understands all of the implications of Dominic’s autism, it still hurts my husband as a parent. It breaks his heart and I think that’s something that will probably never change. When you love someone so very much, you want them to love you back. Dominic may never understand all of the sacrifices his father has made for him. But as the saying goes, parenting is a thankless job.

Once you receive your child’s diagnosis, you will be compelled to find out everything and anything about autism and how to help your child. But don’t neglect yourself in this process. You can help your child by helping your friends and family understand autism. There are some great books on the topic, following are a few:

·   Ten Things Every Child with Autism Wishes You Knew - Great for family members and caregivers

·   Everybody is Different - Great for siblings

·   The Autism Acceptance Book - Great for peers, playmates, cousins, and neighbors

This will be an excellent opportunity for your friends and family to discover the uniqueness of your child and how they can be supportive for you. I would encourage you to read these books as well.

As time goes on and you explore new diets and treatments for your child, you will become very educated on autism. You will also have people question you and your decisions. Especially people who are not educated about autism. Parenting a neurotypical child is a walk in the park by comparison! But all parents have challenges. Let me explain a couple of the things I experienced in my early days. I want to relate them to you because looking back, I didn’t handle them as well as I should have, due to the emotional nature of the topics.

In my first example, I will use my mother and I know she won’t mind. My mom is “old school” in her ideas and upbringing. When we put Dominic on a gluten-free, casein-free diet, my mom respected it in that she honored our wishes. But she was not “on board” with it. It was too foreign to her and she did not have Dominic’s lab test results nor the information behind the diet that we had so extensively researched. You may also run up against someone challenging your decisions, from parents and in-laws, to other parents of autistic children. Someone always has an opinion. In the end, you know your child best and you will do what’s right for your child and your family. Don’t ever doubt that.

Another time, in early August, I had the rare opportunity to join some girlfriends just to get together and talk. One of my friends was simply freaking out about her daughter going to kindergarten that fall and having to ride the bus at the tender age of six all by herself. Well, that same fall my Dominic would be entering the public school system and riding the bus. At the age of THREE. And, he couldn’t talk! Of course, something inside me snapped and I let my friend know just how fortunate her daughter was that she could come home and tell Mommy if someone had hurt her at school. She could go to the bathroom by herself. This was the NATURAL progression of children growing up! I was hurt, furious, and even jealous. Of course my friend didn’t deserve such an outlash. Luckily, I was among friends and no one blamed me for my feelings.

I guess that’s about the time I started distancing myself from other friends and parents. They just didn’t understand and could not relate. Furthermore, I viewed their parenting woes as completely petty in the scheme of things. This was a big mistake on my part. I needed my friends then more than ever. I didn’t give them enough credit. They are compassionate, caring, loving women. I was just experiencing much anxiety and denial and yes, self-pity. It clouded my judgment and affected how I dealt with things. Fortunately, it soon passed.

I will say that you may have acquaintances, friends and even family members who will not be as compassionate. The sad fact is that many people simply cannot handle or prefer not to deal with disabilities, special needs, or anything other than the status quo. I hope you will not experience that, but you should be prepared for it.

Finally, the best way I have found to gain support is to connect with other parents of autistic children. Who else can empathize with what you’re going through? This has been a lifesaver for me! Here are some online resources to get you started:

Parenting_Autism Yahoo! Group

Autismlist Yahoo! Group

EverydayMiraclesAutism Yahoo! Group

AutismSpectrumDisorder MSN Group

The Autism Home Page MSN Group Parent Survival Board

Even better, find a local parent support group in your area:

Local Autism Meetups

Don’t have one? Start your own—I did! (Morris Parents’ Autism Support Group)

Remember, you are not alone. Parenting an autistic child is challenging, but extremely rewarding. Your child will continually amaze you. And you will amaze yourself!