Over the past 14 months, people have asked us why we "thought" Benjamin was autistic. After dealing with the grieving part of the diagnosis (and trust me, it is a grieving process for many people), and after fully acknowledging the diagnosis, we used to take that question with insult. With time, we have come to realize that it is actually a compliment to his therapists and all the time that we have invested into his well-being. Surely all those books I read were for something other than being more educated. Usually the next questions that people tend to ask are, "What were the first symptoms" and "Do you think my child should be evaluated?". I will tell you that even though I am an expert at Benjamin's symptoms, I am not an expert on all things autistic. I can explain why we originally had Benjamin tested and hopefully that will clear up some questions and/or confusion as to why we "thought" he was autistic when he was diagnosed, which was 21 months.
First off, I will explain the criteria and the testing that is involved. The testing is quite extensive if performed by an actual team of doctors. It genuinely takes a team of people to diagnosis this disorder (especially if your child is at a young age) and if you ever receive a diagnosis from a single person, please seek counsel with another practice. The team usually consists of a Developmental Pediatrician, a Speech Pathologist, and a Pediatric Psychologist. If you were referred to this team by another Speech Pathologist, you may not see that particular field represented again. The child basically is tested in the form of play. You can see an abbreviated list of the test at http://www.firstsigns.org/downloads/m-chat.PDF. The actual list that the doctors use is much more extensive and takes about an hour or so depending on how cooperative the child is. Benjamin's test and evaluation disclosure took about two hours. If you have found yourself getting evaluated by your local school system (if you used their services for speech delay or any other delays), you owe it to your child to go and see an actual M.D. for further testing. They use the same types of tests, but insurance companies require a diagnosis from a doctor. Having said that, the school system will help you regardless of a diagnosis, but the world opens up to children with something in writing from a doctor. And when I say the world opens up, I'm talking about money for therapy- it's all about the bottom dollar with insurance companies.
Note that some of these symptoms were not immediately recognized by either Warren or myself. Also, please do not be alarmed if your child has similar symptoms in some of the categories, which are social skills, language, and behavior. Some of the symptoms fit that of autistic children and that of neurotypical children- it's the number of symptoms in each category of the test that makes the difference. The label of Autistic Spectrum Disorder is just that- a spectrum, which means that some children will have some symptoms, some will have most symptoms, or in the rare occasion, some will have all the symptoms. Some of Benjamin's symptoms are pronounced and some are barely mentionable. And one more thing, all autistic children have sensory issues, but not all sensory issues label a child autistic. Children with slight language delay or no language delay at all with strong sensory issues tend to get diagnosed later in their life. That is another topic altogether.
Okay, so on to Benjamin's symptoms.
Social Skills:
1. Failed to point at the given milestone. This can be from pointing to pictures in a book to pointing to objects that the child finds interesting. Benjamin hated being read to. He had no interest and would push a book away when he was old enough to do so. He also did not look at things when we pointed either. Apparently this milestone is one of the more important ones.
2. Failed to make eye contact at the appropriate level. Neither one of us realized that Benjamin hardly looked at people. This isn't necessarily like the kids that you see on television- it isn't as if his eyes were all over the place and he couldn't focus. He just simply looked at other things when you were talking to him. Benjamin would look at you on HIS terms, and this is where we missed this milestone because he would in fact look at you.
3. Failed to recognize his name. Benjamin would turn to look at you when you spoke to him at the appropriate milestone marker, but we later learned that he was just looking up at the sound of our voice. He didn't recognize his name until 24 months and didn't acknowledge his name out loud until 33 months.
4. We had Benjamin's hearing tested at 18 months because we thought that he might have a hearing disorder. His behavior seemed to indicate that he simply couldn't hear you at times. He scored well within range of all the categories, but he did score below average in the low tones. It is difficult to administer a hearing test at 18 months and it was hard to decipher if he was simply bored with that part of the test or didn't hear the tones. He has since scored average in that category. He could always hear normal voice tones though.
5. At 18 months, Benjamin would not play with other children. He would sit in my lap when exposed to other children and refuse to interact with them. In fact, if another child even spoke to Benjamin, he would cling to me for dear life, bury his face, and scream.
6. (I think this one is listed as social) Benjamin did not do pretend play. This is another huge milestone that we missed. I didn't realize that not pretending to feed a baby, or a bear, or whatever you ask them to do that isn't real is a big deal. I just figured that he knew it wasn't real and what was the point? Autistic children are concrete thinkers- they know the bear isn't real and that they won't drink from the cup. They don't understand why you want them to make a fake bear drink.
Language: Note that it isn't necessarily the lack of language, but rather how language is used once acquiring the skills.
1. Benjamin said his first official word at 12-13 months and that was duck. He met all of the milestones for babbling and actually babbled excessively as an infant. He passed the "mama/dada" milestone with ease. By the time he was 16 months, he had "lost" all of his words, and what is meant by that is he completely stopped using them. He started grunting and pointing at 19 months or so. We saw his pediatrician for an ear infection at 18 months and were immediately referred to the Speech Pathologist, who immediately referred us to the Neuro Developmental Pediatrician.
2. Eye contact is listed again under language skills, but it is intended to correlate with making eye contact when speaking. Benjamin didn't speak, so obviously this category was checked because he neither spoke nor looked at you.
3. Benjamin has always had a pretty voice. Even babbling at 8 months, people would comment on how sweet his voice sounded. Later, this would turn into the "sing songy" category and now he still responds better if you sing your requests or questions to him.
4. Once gaining the ability to speak, Benjamin would repeat words over and over. This obviously didn't occur when he was diagnosed since he had no words, but since then he repeats phrases verbatim and uses them out of context rather frequently. For example, he will come up to you randomly and say "Yes, baby?" and this is him repeating me after another time when he will come up and say, "Mommy?". He uses the same inflection in his voice as when I ask him a question.
Behavior:
1. Benjamin was an early hand flapper. We thought that it was adorable when he was an infant. We have it on video actually. He would get on his knees and flap his hands and laugh and laugh. This obviously made us laugh and laugh. Note that stereotypes about handflapping do not necessarily correspond with what you see on television. (again, bad tv!) The kids on tv who handflap do not look happy. Benjamin was always happy when he did this. And also, it should be labeled arm flapping because it actually looks more like they're trying to fly versus just flapping their hands.
2. Benjamin moved constantly. We said so many times when he was an infant that he had baby ADHD. Now this we most definitely knew was different because we had other children to compare him to. We thought that he was oh so smart because he was always on the go, always exploring, always getting into something. We actually had to hold his hands when he was an infant because him own stimulation kept him from falling asleep. He still falls asleep quicker if you tuck him in to where his movement is restricted. (We untuck him after he falls asleep though.)
3. Benjamin loved to line anything up starting at 15 or 16 months. Now people always try to dispute me on this one because everybody knows a child that lines things up. Okay, now, the difference is that Benjamin would insist that these toys be lined up in a specific order and would get extremely irritated if you rearranged them. It's hardly likely that a neurotypical child at 16 months would spend that kind of time and energy lining up cars. They all had to be facing the right way. Benjamin was very intense with this.
4. Benjamin loved to spin the wheels of a large truck. Again, lots of people dispute this one, but it is more the way that the child plays with the toy rather than the act of spinning wheels. He would almost only spin the wheels of the truck and not play with the entire truck itself. He didn't roll the truck until 25 months. That thought just never occurred to him, and it isn't for lack of seeing them being rolled.
5. Benjamin hated loud noises. The vacuum cleaner would send him into a panic attack. Seriously, he would run to you and act as if he thought that the vacuum cleaner would eat him alive. He still hates the vacuum, but now he says the word "noise" and has a disgusted look on his face. Sometimes he still cries when we get it out. Any type of loud noise still bothers him to the point past that of a little distraction.
6. Benjamin was completely oblivious to pain. He could fall outside and be bloody from his knees down and not acknowledge it. He didn't run to us for comfort or act like it hurt in the least little bit. (This changed later when we altered his diet.) We thought we had ourselves a tough little guy.
7. Benjamin did not know how to appropriately play with his toys. Regular toys held little interest to him. This is why he has a billion toys. We thought that he just didn't like the toys that we had for him, even though they were definitely age appropriate. Most toys just frustrated him because they wouldn't do what he tried to make them do.
The classic behaviors that Benjamin had that did NOT fit autism were:
1. Benjamin loved to snuggle and demanded contact.
2. He did not enjoy sustained play.
3. He did not display excessive tantrums. (still doesn't thank goodness)
4. He smiled all the time. He laughed, he had fun, he was always a sweet child.
5. He understood body language. You smile, he smiled. Mad faces would illicit tears.
6. His muscle tone has always been extraordinary.
Benjamin achieved many milestones incredibly early and Warren and I thought that we had ourselves a baby genius. He was very strong as a newborn and infant. He could hold his head up at 2 days for extended periods of time. He was an extremely proficient crawler at 5 1/2 months. He could roll both ways in a locomotion fashion at 3 months. He was/is extremely mechanical. He is constantly figuring out how things work and how to use one toy to manipulate another toy. We took the handle off of our computer desk when he was 12 months old because he kept figuring out how to open the door and turn the computer off. He found a pencil somewhere in a different room and went high tailing to the computer, stuck it in the hole where the handle used to be, and opened the cabinet. This was at 12 months I tell you! Things like that were just so normal to us that we didn't really realize that they were abnormal. There are just so many things that were unusual that we didn't catch until later.
Benjamin has been through speech therapy for a year and has made vast improvements. His diet is gluten free/casein free and that has made more difference than anything else we've done. So I hope that clears up any questions that you may have. If not, there are some awesome websites out there. One of the more in depth ones-
http://www.nimh.nih.gov/health/publications/autism/complete-index.shtml
