Going to begin ASD testing for my 5yo

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In January my 5yo son will be tested for Asperger's. I don't know if he will receive a dx or not, considering that he is pretty high functioning. I would love to get some feedback from others just so I can obsess about this a little less. I'm sorry this post is so long. I realized after the fact that I wrote this more for myself than I had realized.

He is not in Kinder yet, as he missed the age cut-off by 4 days. So right now he is in an employee daycare program at an elementary school (I'm a teacher) that is also an inclusion classroom. The class is set up well for kids with all kinds of developmental delays so he is in a great environment and his teacher doesn't see as many indicators as I do because of this environment.

My husband is self-diagnosed as AS (or rather wife-diagnosed, self-confirmed':D') Miles (our son) has always been a clone of his Daddy. After I went to some trainings on ASD and began reading about it for school, I started to see my husband's and son's traits. My co-workers would roll their eyes at me, saying that I was just reading too much or going to too many trainings. Or that they are like that because they are so gifted (which I agree, they are).

Here is a bit of what I see in Miles:

He was a really hard baby. He was very attached to me. I don't think he really saw me as separate from him. We breastfed and co-slept together for the first year of his life and he never sat in a crib, playpen, or stroller. He would cry inconsolably all the time. I had to keep a familiar bedtime ritual even in the first year to keep him from being out of sorts. There were times in the day I knew better than to be out in public with Miles because he needed to be home or he would be completely out of sorts. No one could watch Miles for longer than 2 hours because he wouldn't accept a bottle and would cry so much.

Also as a baby, he had little interest in solid foods. He became failure to thrive at 12 months old because he would not take in enough solid foods or milk. Weighing in at only 19 lbs, all he wanted was to breastfeed. I was sick of breastfeeding at that point but scared to wean because I didn't want him to starve. We saw a specialist who told me that Miles was having this problem because of his temperment. I was told to abruptly stop breastfeeding and to feed him pediasure and any junk food he would eat just so he could get some calories. After the worst week of my life, Miles began to eat Swiss Cake Rolls, pizza covered in ranch dressing, Pediasure, and very little else. The specialist followed up with Miles and I also had concerns with his gait. Miles had one leg that was weaker than the other. The doctor told me that this was just who Miles was going to be: he was tremendously smart, had an intense temperment, and would never be an athlete. He said he would be like Bill Gates. My mom now tells me that she wondered at the time if that was code that he thought he was Aspergian.

Now Miles is a very affectionate, imaginative little boy. He is obsessed with Transformers and superheros. He can get on the computer and sit intently while he watches interviews with Stan Lee and totally get what they are talking about. He dreams of going to BotCon. He reads at a third grade level and understands what he reads. He loves to write lists and keeps them in a Transformers suitcase along with his Transformers instructions. He loves school and knows all the kids names (but only after he has read the name). His teacher says they are working on helping him grow socially. She said he grunts at the other kids if they upset him and doesn't use words to express himself when he is upset. He doesn't typically have meltdowns at school but his teacher does see that Miles likes to stick to a rigid routine and does not like changes. She had to email me the day the power went out at school and the cafeteria could not serve the planned food. Miles apparently cried quite a bit and refused to eat until the cafeteria ladies made him a peanut-butter sandwich with no jelly and the crusts removed.

At home, Miles is more prone to tantrums and meltdowns. His day must be highly structured or he will become out of sorts by the end of the day and everything becomes a stressful event. We use a visual schedule during the summer and follow a strict bedtime routine every night. Miles must feel like he is in control all the time. We have to give him choices that we can live with because telling Miles to do something never works. He has a hard time playing with children is own age. The neighborhood kids are sometimes mean or manipulative with Miles and he never catches on. For example, they were playing keep away and Miles was thrilled to be out there chasing after the ball even though they were laughing at him. Miles still has what I believe are sensory integration issues with food. He can handle meat textures and breaded textures. He can't eat anything gelatinous. We live a mile from the border and the kid has never had a taco or burrito or beans or rice! He's never had a hamburger but at least now he'll eat the patty by itself. He likes to make up words sometimes when he talks. He called me Bogo, his sister Togo for about a month. He licks everything! Now he does it on the sly because I freak out about it but I'll still catch him licking his feet or the bottom of his shoes. (I'm chalking this up to sensory integration stuff.)

I don't know if a diagnosis will make a difference in Miles's life. I don't know what they could do for Miles. At an autistic evaluation for one of my students that I believed had AS, the psychologist said that she told the mom of the kid that if she didn't do something about her son now, he would always be weird. That this was something that wasn't going to go away on its own. I was horrified of that statement. I really like my kid. I want him to be happy in life and not feel like he doesn't fit in. But I don't feel like someone needs to fix him. (Well, at least I don't unless he is having a meltdown. Then it's a different story.) I appreciate any insight anyone might have. If you got this far, thank you for your time reading this!

That's not so bad. This is horrifying only if you think that "weirdness" is automatically bad. Sometimes just knowing the weirdness is normal for your kid makes it less distressing, and more just the way he is. My son's weirdness is what led to his, and my, diagnosis.

Having a diagnosis can make for access to extra help and also to understanding and tolerance of eccentric behaviors, like the food and routine things. My life would have been so much better growing up if They had known about it. I can't tell you how many times my dad told me to buckle down, and I would have, but I didn't know how. Turns out my buckle was broken. My son had it in school in a much more pronounced way, but he did get services to address his AS, and staff knew he wasn't being deliberately difficult.

Polgara- I appreciate your insight on getting a diagnosis. It makes me feel like I'm on the right track. I don't see weird as a bad thing and I don't think they could eradicate it from Miles anyway. But this lady said it with such a negative tone in her voice--it bothered me. I hate the idea of people thinking we need to fix my boy.


On another note, I've also dealt with the attitude of, "Oh, I hear a lot of parents are trying to get their kids diagnosed with autism these days. What are you hoping to get out of it?" Like this is a new trend I'm following! Who knew social awkwardness would be the new hip thing!