Could my son have Asperger's? Feedback very much welcome.

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I am the very proud mother of three children, two sons age 10 and 4, and a daughter who is 6. I am brand new to learning about Asperger's so please bear with me if I come off ignorant.

My ten year old son was a puzzle from very early on. Not at all in a bad way-just a little different. It was evident to me from the time he was a very young baby that he was so intelligent and healthy, so I didn't worry too much that the physical baby milestones, sitting up, crawling, etc were always achieved a few months after the baby books said they would be. Our doctor didn't worry either-he said the important thing was he was achieving them. I was a little more upset that talking came so late...I was so looking forward to him saying 'mommy' and saying his own name and being able to communicate with him. Sam would say a few words but he wouldn't respond if you talked to him or asked him questions. He spoke when he felt like it. He didn't really start engaging in dialogue until three. My mother was the person who suggested he might be autistic-she basically said she felt Sam was in his own world. I was pretty upset by the suggestion and then I went and looked up some stuff about it on the net and it just didn't seem to fit at all.

When Sam was nearing four I tried to teach him to write his name and letters and basic reading-it was a complete no go. He had absolute no interest in it. However, my MIL bought him a spelling toy and Sam was fascinated with it. I was amazed because within weeks he'd taught himself the alphabet and memorized the spelling of dozens of words. Yet he couldn't read. Because he was so proficient with learning the letters and the words I made the decision to send him to kindergarten when he was still four, a few months from being five, instead of waiting the extra year, a decision which I really regret now.

I remember him being five and me being just in despair that he could barely hold a fork to feed himself. He still is a pretty messy eater. He also had no interest in coloring, ever, so that was out as a way to help his coordination improve. His kindergarten teacher was absolutely wonderful with him but she also had a lot of concerns about his coordination. He was so bad with the scissors, even the child safe ones, that the teaching assistant had to hold him on her lap and guide his hands whenever they used them. His reading was the best in the class, he was very good at math, but his handwriting was atrocious and his coloring unrecognizable.

Anyway, we discussed his motor coordination difficulties with his pediatrician, who sent us to a neurologist. The neurologist evaluated Sam, said yes he was lagging on motor skills but it was probably just a boy thing, and wouldn't clear us for occupational therapy which upset me a little. But he also said he felt that Sam didn't have any disorders like ADD or ADHD and I was relieved. Asperger's was never mentioned; in fact I'd never heard of it then.

Anyway, I've always just accepted Sam's quirks as just Sam. Most of them don't worry me but to this day his handwriting is very bad and always a struggle for him in school. He is still not coordinated, he despises sports, and he can barely tie his shoes. What bothers me the most is his social skills. Many teachers have described Sam as 'immature' and noted he seems more comfortable with younger kids. Sam has a hard time standing up for himself and is often bullied. He is much more interested in video games and Pokemon then being friends with kids his age and he does have a hard time with social interactions. Unless the other boys want to talk about his favorite video games or his cards Sam doesn't really have a lot to say to them. He also gets frustrated easily with other kids and gets his feelings hurt extremely easily.

What got me thinking about Sam and Asperger's is America's Next Top Model-don't laugh. One of the models, Heather, has it and just some of the things she described made me want to learn more about it. I was reading about it tonight and a lightbulb went off. So many things just seemed to fit, like Sam taking every joke I make so literally, things his teachers have said to me, the obsessions with odd things For Sam it's video games, computer games, football scores, facts and figures, and those point redemption things on food packaging-don't ask me why, I have no idea.)

Anyway, I'm sorry for the long rambling post. The point is, I think Sam might have Asperger's. It would explain a lot-more than I've put in here. I don't know if I've mentioned the right things but if anyone has any feedback for me I would appreciate it so much because I'm literally shaking right now. I feel like crying and laughing at the same time, crying because I don't want Sam to have to struggle with anything, I don't want him to have difficulties, but laughing because I always knew there was something and so many people have blown me off.

The other thing, if he does, what do I do? He's such a wonderful kid, such a help to me and so sweet. I don't want to be running around making him feel like there is something wrong with him. At the same time, I worry about him at school and socializing, etc. He already hates school and in two years he has to go to middle school. I am dreading it to the point where I almost want to homeschool him. I know how kids that age are-I'd be worried even if Asperger's wasn't a possibility. Does anyone have any advice for me at all, or any other questions; any ideas who I should take him to or what I should do next?

Hello Kelliott,

Welcome to WP!

You sound like a great Mum. You have accepted your son and done everything you can to help him.

I am the proud mother of three sons - aged 9, 7 and 4. My 9 and 7 year old sons were both diagnosed with Asperger's this year so I've been on a steep learning curve.

Your description of your ten year old son sounds so similar to my boys. Both have poor handwriting, difficulties with fine and gross motor skills and difficulties with social skills. Both are extremely intelligent and quirky. I love their quirks.

I would contact your local Autism society and ask them to recommend a psychologist or psychiatrist who has a special interest in Autism Spectrum Disorders.

I recommend you have your son diagnosed. Having my sons diagnosed has ensured they have access to services, and programs at school.

Both my boys knew they were 'different' and were becoming distressed about it. When they were told about their Asperger's it was a great relief to them. They both love WrongPlanet and soon after I joined they insisted on also joining.

My 9 year old posts as AussieBoy and my 7 year old posts as UbbyUbbyUbby. Perhaps after your son is diagnosed you could have him join WrongPlanet and chat with my sons? He will love finding others like himself

Since my boys have been diagnosed they have both initially had weekly psychology sessions for 12 weeks. My 7 year old goes 1/month know and my 9 year old goes 1/fortnight. The pscyhology sessions focused on: teaching them about Asperger's, teaching them about emotions, learning how to manage their emotions, learning social skills.

Both also have Individual Education Plans (IEP's) at school. They spend most of their time in the classroom, but the curriculum has been 'tweaked' to match their interests. They see the Special Ed teacher every day for 30 minutes - 1 hour. They can also have 'time-outs' if they become overwhelmed with the noise of the classroom.

I recommend you read Tony Attwood's book - Tony Attwood is the absolute 'guru' of Asperger's. We are lucky enough to live in the same city as him (Brisbane, Australia).

Also, Carol Grey is another good author.

I learned so much from WrongPlanet.

By all means ask questions in the Parent's Discussion ... but I recommend you read and post in other sections. Adults and teenagers with Asperger's on WrongPlanet have taught me so much.

Regards
Helen

Thanks, Smelena! I've been reading through other posts in here and it's just...everything is so familiar. It's like it makes sense, for the first time, and I'm very shocked but at the same time I feel such a sense of relief. I was just getting so tired of people, especially teachers, acting like there was something wrong with Sam. I remember last year getting called in for a conference about Sam getting bullied and really being treated like I was the one doing something wrong. When I asked about how the bully's parents were handling the situation I was told they hadn't even contacted them! Somehow it was my son's fault for being 'different'. I was very angry but I felt guilty at the same time, so I didn't stand up to them like I should have. I am really glad he doesn't attend that school anymore.

I am definitely going to look into having him diagnosed to see if this is really what is going on. First I have to talk about this to my husband, who I think is going to be less than receptive but hopefully I will be able to help him understand that this isn't a bad thing, that it's just a way for us to understand Sam more because I know he has been bewildered by some of these things and frustrated from time to time.

It sounds like he could be somewhere on the autism spectrum. Usually, delayed speech will result in a diagnosis of autistic disorder or PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified) rather than AS, although that depends on which set of diagnostic criteria the shrink doing the evaluation is using.

Here are the key features:
1) First and foremost, social impairment. This usually includes a number of signs, such as taking words too literally; disinterest in socializing with kids his own age; late and limited verbal skills (in autism) or unusual speech, such as use of uncommon words and formal style (in AS); lack of eye contact; unusual body language, particularly when under stress; inability to understand the body language of others; difficulty reading the facial expressions of others; difficulty figuring out what other people might be feeling or thinking.

2) Behavior patterns. These include things like getting very upset about minor changes in schedule, moving of objects to different locations, changes in food, almost anything which is a break in routine. It also includes obsessive interests in very specific subjects, and repetitive behaviors like jumping up and down, flapping the hands, or rocking, either when excited or when relaxing. Echolalia (repeating what someone else has just said) and palilalia (repeating one's own words) might qualify also, both are quite common when kids on the autism spectrum are learning to talk. So is arranging toys by color, or size, or type, rather than playing with them normally. When they are toddlers, they may get so focused in on things that they will become totally unresponsive when people are talking to them, sometimes enough so that one wonders if they are hearing impaired. At later ages this usually manifests instead as being pretty upset whenever reading or similar activities are interrupted.

3) Poor physical coordination has been noticed in a high percentage of kids with AS, but it is not listed in any of the diagnostic criteria. It probably should be. Unusual sensitivity to particular sorts of sensory input are also quite common.

Other details vary based on the diagnostic criteria used, in the U.S. the criteria from DSM are almost universally followed, but others are popular elsewhere. You may find all of them here.

I'm sure that I've left out some things, but I'll leave those to other posters to fill in.

Hi, Kelliott!

I think that you are on the right track, that you should have someone at the very least check your son out to see what can be done to help him. An evaluation by a professional is the first step, and you should get this appointment scheduled as quickly as possible, because depending upon where you live, this could take anywhere from three to six months to get the actual evaluation done.

What state do you live in? Services vary from state to state. We've lived in many different states, and often you can get therapy through the state, or LOTS of help through the school district. Sometimes you get wonderful help through the state, and nothing from the school district, or, depending upon the state, you could have exactly the opposite.

What is sometimes available to you, after you've received a diagnosis:

1. Speech therapy provided by the school -- they will work on pragmatic language skills (helpful when your son takes things too literally). They might also work on conversational skills. The speech teacher can also provide things like having your son pick one or two friends to go to the speech therapist's office, and then she will have them play games together, and work on your son's play skills. Also, he may be able to pick one or two friends to go to the speech therapist's office for lunch, something the kids enjoy, and the therapist will work on your son's conversational skills. Our school speech therapist has been our greatest help in the school setting.

2. The school is often REQUIRED to provide OT (Occupational Therapy) services, to help with handwriting skills.

3. The state can provide behavioral services, where a therapist comes to your home and works with your child on any behavioral problems, or play skills, or conversational skills. This is usually done with younger children, but may still be an option for your son.

4. The IEP is something that, after a diagnosis, you and the school personnel get together and talk about problems your son is having in school, and the teachers are supposed to help in specific areas where your son is having difficulties. This IEP may guarantee things like extra time on tests, front-of-class seating (if he has attention difficulties), assigning a nurturing peer to help with writing down assignments or taking class notes, etc. The IEP can be a really helpful thing, if all the members of the meeting understand autism spectrum difficulties and work together to help your son.

5. The state may also provide social skills classes. My son has done this for about three years, where he meets in a group of five to twelve kids who are also on the spectrum, and the therapists work with them on things that they may have difficulty doing, such as entering a group to play, conversing about something other than their obsessive interest, trying new things (like playing basketball when they aren't very good at sports), etc.

This is just a few of the options that may be available to you. Please keep us posted on how you and your son are doing.

Kris

I have a son that was not diagnosed until he was 24 years old. He walked into the Dean of Students office and said I am different than anybody you have here on campus and I do not know why I am different. He, never haveing a student walk in and say something like this to him, decided that Here is a kid that is asking for help and he decided to help him and set him up with a psychological evaluation, and the college paid for it.

My son had been through testing since he was 5 years old, because of differences teachers had picked up on. He has been seen by all kinds of doctors and has had counciling, but no one ever came up with Aspergers and high functioning autism.

When they called me and told me that they were done with his testing and that they wanted us to come in and see them. Upon arriving thay told me that everything was going to be okay, and I was right that there was something special about my son.

When they came up with Asperger's and high functioning autism, I sat there and said why could it not be something that I knew something about. Not realizing that I did, I had learned a lot when raising my son, even though everyone else told me that I should be doing this and that, but as his mom I knew what worked and what did not.

School was a disaster, and one school here in Iowa has a class now just for children with autism.

The state of Iowa classifies my son is disabled, my insurance company keeps him on my insurance due to his disability, but the federal government says he is not disabled, he could hold a non skilled job, which is great for someone with a college education. They say that there is not enough evidence to prove that he had Asperger's and autism prior to age of 22.

I think that we should band together and do something to make this a better world for our children, and their survival. We need to educate, educate, educate.

I would like a survey of how many with Asperger's receive SSI or other services, and from what state they are from. I want to collect data and I do not know who yet but I want to present it and make a better environment for our aspies.

I have learned a lot from Tony Attwood, I wish he could meet my son and help him not be ashamed of what he has, he does not anyone to know that he has it. I tell him that it is a part of who he is and that he should embrace it and love it as much as he loves himself.

A funny story that I learned how to get my son to do something that I had been asking him to do for a long time.

He is in college and I go and collect his laundry and I kept telling him to have his laundry ready. Everytime I got there it was not ready and I would raise my voice (bad mom) and would tell him that he did not have his laundry ready because it was in piles throughout his apartment. I would collect it in basket and bags and load it in my car. He would always tell me that his laundry was ready. This went on for 5 years until I read that he sees things in pictures. I thought okay I will test this one.

I called him and said hey Nathaniel when I get there picture this: When I get there have all of your laundry ready in baskets and bags in the middle of your livingroom. He said: "Hey mom, I can do that.

Upon arriving at his apartment there it was in basket and bags in the middle of his living room. I was so excited. And told him what I had learned about him. He looked at me and told me that he did see things in pictures.

Where was Tony Atwood's books when I was raising my son?

Why did it take so long to get a diagnoses? Is because I live in a state that does not have services for Aspergers and many doctors do not have any knowledge of the disorder.

I am with you, but after my son's diagnoses I read everything I could get my hands on and when I opened up the first book I cried because there was my son sitting on the pages of a book, a book I did not even know existed, I could have been a better more helpful mother to my son.

Asking him to make a decision was like as he tells me putting him in the middle of the ocean with a small measuring cup and telling him to empty the ocean.

Just wanted to make a comment about being labelled with "Aspergers Syndrome."

When I found out (which was, like, last week)--after I had read up on it--I was just so relieved to know that I wasn't alone in my unintentional weirdness. It's the best feeling in the world to let your loved ones know that all your life you haven't intentionally been acting stupid or immature.

I bet it'd make him feel better to know that he isn't the only one in the world that feels like this.

Hi Kelliott

Welcome to WP.

I'm not an expert but have a 14yr old son who's only recently been diagnosed with AS - one main difference that I would say between your son and mine is that mine was talking in full sentences using an incredibly wide range of vocabulary at the age of 18 months. Everything else you've said though - well we could be talking about the same child.

I don't know if you've heard of dyspraxia but that sounds like something your son probably has (mine does and it seems to go hand in hand with Asperger's for many) - It's also known as 'clumsy child syndrome' (in England anyway) and would explain his lack of co-ordination.

I wish you all the best with him and hope you don't have too many probs going for a diagnosis.

Take care

He sounds like he could very well be an aspie. You should take him to be tested. It sounds like your doing a great job with him and are a good mother. Good Luck.