My son.

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My son is about to turn seven. I started wondering if there was anything “different” about him when he was a baby:
- His first smile came much later than it said in all the baby books
- He didn’t copy my facial expressions (stick out tongue when I did, etc)
- He didn’t do the typical “dadada, mamamama, lalala” type noises
- He never reached out to me to get picked up
- Never pointed at things
- Didn´t nod yes / no in response

When he became a toddler he started using some words, but his spoken language was a bit late and he still speaks “less well than others his age”. But he is bilingual so I thought the delay might be related to that (we lived in Spain, his father is Spanish and I am Swedish) plus he developed fine in other ways, walked early, so I tried to not think anything of it, still he:
- Often didn’t react to his name
- Didn’t wave or say hi
- Didn’t react when daddy came home from work, or grandma came over
- Became very difficult with food
- Had no interest in other children
- Loved buttons, remote controls and other technical things

By the time he was 20 months old he would say all the numbers over the houses as we walked past them, but still his language apart from that was very limited. But he DID speak, he did interact, hug and cuddle, but just less in a social manner.

He was (and still is) a very sweet child, very easy to handle, a bit passive, I felt like I could do anything with him, he wouldn’t complain. He was a cute and unusual little boy that overall was developing fine, there was nothing “obviously” weird about him to other people, just to us in the immediate family. Me, his dad, his two grandmas and his aunt. His grandma insisted he was deaf, “take him to a doctor to get his ears checked” she always said. But I didn’t because I knew there was nothing wrong with his hearing.


At age three he started school, it was a big group of 25 children and just one teacher. From age 3-5 he became more and more introvert and strange, he was virtually mute at home. Wouldn´t reply to simple questions like “would you like a sandwich”, I would, and still do, hold his face gently in my hands and say “Alex, do you want a sandwich, YES OR NO”. The teacher at school said he was a good boy who always wanted to answer all the questions and talked non stop. I found this very strange as he was so silent at home. It was during these years that he became obsessed with his Nintendo DS.


He never started drawing people or animals, his first drawings were of arrows, signs and numbers. And nowadays he only draws if there is a message to be conveyed or for organization: he makes calendars for himself or instructions for the rest of us (usually in writing or as a rebus). He started counting at this age, could do plus and minus in his head.

School was a pain, he didn´t like it at all and I hated taking him there. At age 5, I was very worried about him, and started videotaping him. He said strange things that didn’t make sense to me and used to touch our faces when we talked. He would touch my mouth and look around my face but not in my eyes.


We moved back to my native country, Sweden, where schooling is very different (children start school at age 6 instead of age 3, groups are smaller and it’s a society where there is more understanding and help for children with special needs).

He started kindergarten in Sweden, groups were very small (6 children per teacher) and they noticed he needed “peace” and that he struggled interacting with other kids so they put him in a group with children who were more accepting /easy going. At this nursery he did so well, in a year he went from being “odd” to being practically normal. Still obsessed with his Nintendo, with numbers, with calendars, etc, but happy and much more responsive. He had no proper friends still, but some kids admired him because he would make cool things, like he would build long pipeline systems in the yard for the rain water to run through.


In august this year (age 6) he started school. They are 25 children with three teachers. He does ok, he is good with math and reading/writing, but he has become a bit more odd again. He is struggling a lot with the social bit, he hates going outside to play, in the school kitchen they give him special food as they noticed he wont eat otherwise, he cant handle situations where they all need to sit still together and listen to a story or have a “meeting” he just starts humming and rocking, or he starts running back and forth.
One of the teachers had a meeting with me the other day where she said she feels he needs some kind of support plan or things might “go wrong” from him in school over the years. She said “its not enough that he is very smart and can do the reading and the math, he has to learn the social bit, he has to learn to do as he is told and to participate, he has to learn to get dressed to go out when the rest of us are”. And she is right of course.


He has always hated pretend games, he gets very stressed when his little brother and me pretend or just say we are animals or babies or something. When he was smaller he would look terrified and say “NO NO NO NO , I’m a BOY”. Now he seems to have matured a bit about it, the other day I said “We can play that your brother and you are birds” and he said “NO! Stop it! Don’t talk like that, I don’t like it”. He is much better at saying hello too, often when I come home I say “hello Alex” and I will get a silence then a “yes… hello”. Or he will just repeat what I just said “Do you want a sandwich” and he says “Do I want a sandwich?.... Yes”. The fact that he has to answer seems to annoy him a bit.

His Nintendo is still his big love. There is nothing else he’d rather talk about.


I’ve booked an appointment to have him evaluated now. I’m terrified they will tell me there is no diagnosis for him, that there is nothing wrong with him. I’m scared they won’t see what I have always seen. He is a very bright boy, and so sweet, he has no ticks or anything, doesn’t flap his arms and stuff, so it’s not in-your-face-obvious, but he needs some guidance and only with a diagnosis do resources become available to him (in my opinion he needs help with his spoken language, with social skills and to manage normal daily things like getting dressed (would take him the whole day if I left it to him)/hygiene/learning to eat a variety of foods.


This is so long. I’m sorry. I just wonder if you parents can relate to this and if my thinking he might have asperger is on or completely off track. I have no one to talk to.

It seems, from what you wrote, that there is some severe rigidity in communication that should be a red flag for a professional. It's interesting that when he repeats things back, he changes the pronouns correctly - so he understands the rules of grammar, but doesn't seem to understand the point of communicating, right?

Keep in mind, many of us have known something was up with our kids for years but it took a long time before we found a professional who "got it." It does help to go to the right discipline: a developmental pediatrician or a pediatric neurologist who is trained in autism. Even then, sometimes this is a long road - while I am hopeful for you, don't give up if you don't find help, just find a new doctor.

Make sure when you go that you copy this post and bring it with you to the doctor.

What you wrote is very familiar to me. I think you laid it out in a very organized way, and that a professional who is worth anything will take what you say very seriously.

Your son sounds delightful.

Bring the letter that you just wrote to the appointment.

It is interesting that he does not stim very much. I never stimmed much and I do not see my boys stim (in the traditional hand flapping way). My boys are not evaluated but I will get an opinion when I get my own diagnosis and a few other things are in place.

I have one 12 year old who have very strong special interests, he is very intelligent and very liked by his peers (if in the right environment). He also show a lot of other traits, but they are mild, compared to so many other on this site (or else his environment has been very mild on him - well I thought he was totally normal (like me) until less than a year ago).

Keep us updated on his diagnosis, I for one is very interested in how a "less obvious" child is treated by the professionals.

It would also be helpful if the teacher would be willing to write a letter expressing what she sees in the classroom that causes her concern about his development and his need for support to succeed in school. Having that second person outside the family validating what you are saying can carry a lot of weight with a psychologist. Also, if this professional doesn't see the issues, try to find someone who is trained to administer the ADOS (Autism Diagnostic Observation Schedule).

He does. That humming and rocking he does at school counts. Kids with autism don't stim constantly, it is a response to circumstances. If you go to a good, reputable professional with the right expertise, I feel you will do fine. They should be asking you the basis for your concerns, and the things you and other caregivers are seeing in "real life" environments where your son spends time.

For what it is worth, my son had far less noticeable early symptoms than yours (specifically, he had very early language development, has always had an outstanding vocabulary, and will talk anyone's ear off on a wide variety of subjects), and he was diagnosed at age 6. It's the lack of interactivity in his speech and behavior, lack of problem-solving in personal interaction, and the issues this caused at school, that mattered, not that he was bright (he is) and displays nice manners when calm (he does).

It sounds like selective mutism.

http://en.wikipedia.org/wiki/Selective_mutism

I see a lot of red flags here, more so than in most descriptions from parents who suspect their children of being on the spectrum.

Thank you all so much for replies.

He does a lot of humming and noises, I just never thought of it as stimming. When I pick him up from school the teacher usually says "you can hear where he is just follow the humming noise" and he is usually in a corner somewhere alone building with lego or tying things together with string.

When he was smaller he would do these really annoying high pitched "beep" type noises that would drive me insane, he sounded like a beeping alarm or a machine or something. But I didn't think of it as stimming either.

One thing he also does, and it is relatively new, is that when he says something he immediately mouths it again silently. It looks a little strange.

Once again, thank you for taking your time. It's very much appreciated.

it can feel so intense when you see all the signs, and then the teacher sees the signs that there is something not the same as everyone else about your child. You watch him struggle, and you want to help him so you decide to go to the professional. All the power to get help for your child is in that professional's word/decision and you just want the professional to see what you do. Hang in there.

I also wanted you to know your post made me smile. You did a great job describing your son, and I love the language the teachers in Sweden use to describe his needs. It sounds very accepting and warm. Your son sounds like a wonderful delight, and I can see a lot of similarities with my son. My son is also very rigid in his thinking, cuddly and affectionate, and loves numbers.

Just a quick note. It is very important to get him tested and keep testing if you do not get the result you believe is true. My son displayed very few "flags" as a young boy. However, teachers often told me that "something was just not quite right". I got him tested several times to no avail. The dos said things like "borderline autism" but not to worry. He was not still is very social. He has other issues. It took his sophomore year in high school to get an official diagnosis. As a result, he has missed out on a lot of services and even now, at 23, he is missing out on opportunities for help. I should have been more aggressive in finding an answer.

Just saying, my son runs back and forth. He follows a path when he does it, at least for a little while. He also paces this way. He has little routes he likes to take in my house and in our backyard, and quickly creates little paths at different places (not always, but a fair amount of the time).

They counted this as a repetitive behavior, even though it doesn't really seem like a repetitive behavior. Though, I described it in a lot of detail.

So, I think it is something to mention, too.

It surprised me, I didn't think he had any repetitive action or behavior, but they did count this.

(Though I was pursuing the diagnosis as it helps my son to get services.)

Also, sometimes he will go in a kind-of big circle, so it is not just paths or back-and-forth.

I do this - or used to, when we lived in a place that had a floor plan where it would work. For me - definitely a stim. DH used to call it "pacing like a caged tiger."

Removed because I meant to start a new thread. Sorry OP!

Last edited by InThisTogether on 17 Dec 2012, 5:47 pm, edited 1 time in total.

I have not heard about that before now. (My son is seven)

The only thing I have heard about is for some there is a regression at about 2, and that during puberty behavioral issues can be worsened (or improved.)