Expert: Ettina - 1/28/2009

Question
QUESTION: My son will be 4 in May. Ever since the birth of our daughter in July 2008, we have noticed a huge change in his behaviour. Maybe it was always there but we just didn't acknowledge it until now but we've seen a major change in the past couple of months. As a baby, he was always very squirmy when others tried to hold him. I think he was ok with me but then I have forgotton ALOT! He seemed to have hit all his developmental milestones. Although now that I think of it, I don't really remember him pointing much or bringing things to us. He waved inconsistently because I remember having to tell him to wave and sometimes holding his hand to help him. He did start talking rather late - around 2 years old and the first thing I remember him saying was "I see the light" and he would say it often. He has been in Montessori since he was 16 months old and they always told me don't worry, he'll start talking soon - everyone told me that and had stories of other kids who started speakinglater. I was worried but I guess I was in denial and thought well he is a boy and they usually do things later than girls. When he leaves school, he has to shake his teacher's hand and I also remember them always waiting for him to look at their eyes. I have now just recently noticed how little eye contact he makes and when I ask him to look at me he puts his face very close to mine to look in my eyes. Since December 2008, he has become very clingy with me and doesn't ever want me to go anywhere - I literally have to sneak out or I just don't go out. We can't take him out with us because he is too hyper (he always has been extremely hyperactive) but it's worse now. He is also very impulsive - when I pick him up from school he gets so excited to see me so I have to wait outside until he comes out with his class. He has also become very aggressive with me when I am disciplining him i.e. hitting, kicking. A friend of mine who taught Special Ed (we're in Canada) had noticed his quirkiness at my daughter's baptism and that he didn't look at people when they talked to him and suggested that he could have AS. If she never said anything I probably would be thinking that he was ADHD. As my daughter was baptised, he became very emotional when he heard her crying (we are Orthodox so it is a big thing and the baby is dunked into the water, etc). He also didn't want me to dance and became very upset and cried for most of the night. I don't know if it was the birth of my daughter or her baptism that brought this out because I've heard of autistic devices or something like that where for example a birth of a sibling is traumatic and brings out autism?!?! He speaks loudly even at night when our daughter is sleeping even if I ask him to whisper, he asks a lot of questions and keeps questioning our answers, he is starting to make more eye contact than usual but it still is not enough, when we call his name he sometimes takes a while to respond, esp. when he is watching tv or doing something - but he answers when we say something like "ok, we're gonna turn off the tv if you don't answer" or if I say "can you hear me?" he will answer "no". He has a great memory - remembers a lot of things when he was younger, and recently always talks about "when I was a baby....", he copies his sister when she screams or cries and tries to act like a baby at times. He seems to play imaginatively...He does flap his hands when he gets excited and sometimes spins around, esp. when he is dancing. He seems to have a couple of friends at school that he talks about but I don't really know how he plays with them or other kids in general because we don't have any kids in our family or in our neighbourhood so he is mostly with adults. He has good gross/fine motor skills, eats pretty much everything, and has been toilet trained since around Feb 2008 - so almost a year. He is also affectionate and always tells me he loves me and his sister and dad and kisses us. He rarely acknowledged his sister until recently. I don't know if there is anything else you need to know. We are having him assessed in Feb with a Psychologist and then in May we are seeing a Neurological Pediatrician but I have been going crazy looking things up on the internet, trying to find information. Sorry my message is so long.

ANSWER: Regarding whether a sibling's birth or some other upsetting event can bring out autism... that used to be the prevailing theory, back when psychoanalysis was more popular, but now it's known that autism is biologically based and mostly caused by genetics. Autistic kids, like any other kids, can be stressed out and have trouble coping, and with autistic kids this often shows up in an autistic way. But they are already different, it just becomes more evident when they're less able to compensate.
It does sound like your son might be on the autistic spectrum. Of course, I can't diagnose him over the internet, but that's what I think is likely. Incidentally, ADHD and autism actually overlap quite a lot - something like 50% of kids on the autism spectrum meet criteria for ADHD (except for the 'does not meet autism criteria' part of the ADHD criteria!).
One book I highly recommend for parents of kids on the spectrum is called 'Autism Life Skills' by Chantal Sicile-Kira. The author asked autistic adults what they thought was most important for an autistic kid to learn, and developed a top 10 list, with topics like self-esteem, safety, self-regulation (being able to manage their own emotional needs), etc. It's a great book.
I wish you and your son the best.

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QUESTION: What is the difference between ADHD and Autism/AS? Do they both hyperfocus? Also, I don't get exactly what PDD/NOS is or how it differs from ASD...

ANSWER: ADHD is defined by inattentiveness (distractibility) with/without hyperactivity. Many ADHD kids also hyperfocus at times (it's common to find kids who are distractible when uninterested and hyperfocusing when interested) but hyperfocusing is not part of the criteria. In addition, if a child hyperfocuses but isn't distractible - like many autistic kids - they don't meet criteria for ADHD.
Autism/AS are defined by social problems and odd behavior, with or without speech problems (autism with, AS without, although studies show that the division is somewhat arbitrary). The criteria look at a different area than ADHD. In practice, most kids with ADHD have social problems, because inattentiveness means they miss many social cues and hyperactivity and impulsiveness can be very annoying to others, but a kid can be diagnosed with ADHD and be socially skilled, while they have to have social problems for an autism spectrum diagnosis. The odd behavior criteria for autism usually imply hyperfocusing, because they include things like intense interests (in other words, hyperfocusing on a certain topic).
The autism spectrum is officially divided into the following categories: autism, AS, Heller Syndrome (also called Childhood Disintegrative Disorder), Rett Syndrome, and PDD NOS. Autism, AS, Heller Syndrome and Rett Syndrome each have a specific set of criteria, and then PDD NOS is a category for kids that the psychologists consider to be on the autism spectrum, but they don't meet criteria for any of the other four categories. So PDD NOS basically means 'they're autistic, but we don't know what kind of autistic'.
As such, it's a very variable category - for example, it includes kids who are too severely cognitively disabled to meet criteria for autism (eg function below about a 1 year old level), kids who are too mildly autistic for an AS diagnosis, kids with atypical features such as increased eye contact and obsessive pretend play as well as autistic traits, and so on. It also includes some kids who actually meet criteria for another category but are atypical and the psychologist thinks PDD NOS better communicates that. It even includes some kids with severe ADHD who need more help than most ADHD kids need, and would therefore benefit from autism services.

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QUESTION: I took my son to see his pediatrician today (for a cold) and he was asking me about everything and said "this is not a child with a PDD". How well do you think a doctor could be in picking this up after a 20 min or so visit? He has also said to me in the past that he is in no way an expert about this and that is why he made an appt with the neurological pediatrician. He also told me that he may even be feeling my paranoia about the whole situation. I was telling him that he has started making a lot more eye contact with us when speaking lately which is surprising me! Can a child just be quirky and that's it? My sister thinks that he may be gifted? Do you know anything about giftedness? Also about the hyperfocusing...I'm kinda confused because he only does it when he is watching TV or doing something he is interested in. Like I said if we tell him we are going to turn of the TV or something like that he answers us. You said "it's common to find kids who are distractible when uninterested and hyperfocusing when interested" - this describes him because he gets distracted very easily and jumps from one activity to another. I suspect that he may just have ADHD but then what do I really know?!?

Answer
It takes a lot of skill to diagnose a child as autistic, because of the variability in how autism shows up. A lot of people, who know a bit about autism but not much, might say that a kid's not autistic because they don't fit a particular stereotype when in fact many autistics don't fit that stereotype. The fact that the autism diagnosis has gotten much broader recently makes it more confusing, because many people may have formed their view of what autism is back in the 60's or 70's and don't realize that the criteria are broader now.
Distractible when uninterested/hyperfocusing when interested is typical of both ADHD and autism. What would distinguish the two for a kid with that attention profile would be the presence of other autistic traits. For example, in social skills, an ADHD kid's difficulties should be because they aren't paying attention or suppressing impulses, whereas an autistic kid's expected to have social problems because they don't understand others (if a kid has both issues, that would be autism too). In other words, the ADHD kid understands people but can't but this understanding into practice, while an autistic kid also has trouble understanding people.
In terms of odd behavior, ADHD kids typically are just hyperactive, distractible and/or impulsive but with fairly normal interests and such, while an autistic kid would have some combination of odd mannerisms like hand-flapping, strange interests (could be things like being obsessed with doorknobs, or could be more ordinary interests but looking at an odd aspect of it like memorizing stats about a sport they refuse to play) or getting really upset by changes, such as when you take a different route or have bathtime before supper instead of after. For example, one autistic girl I worked with had a meltdown when we were going swimming because I took her in the family change room instead of the women's change room - because her routine was to go to the women's change room.
There is no clear dividing line between quirkyness and autism/ADHD/etc. It's a spectrum, with normal at one end and very severe autism at the other end (that's somewhat oversimplying, but you get the point). The kids at the extremes are easy to tell apart, but in between that, it's hard to draw a line.
I'd say that basically you should go by whether you think your son would benefit from being diagnosed with something. If, in your opinion, he needs some kind of help that only ADHD or autistic kids can get, then seek a diagnosis. In terms of how you look after him, however, it makes no difference. What matters is who he is, as an individual, and what you find that he needs. As long as it's stuff you don't need some outside system (like school) to provide then the diagnosis is unnecessary. For example, I was homeschooled from grades 7-9, and during that time I self-diagnosed as autistic, but I was only officially diagnosed when I went to high school for grade 10. That's because before then, all the accomodations I needed could be gotten simply by telling my parents I needed them and why. The school was only willing to accomodate me if a psychologist said I needed it.