My 6 year old son diagnosed with partial AS yesterday, help!

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It's been a struggle over the last few years trying to figure out what's going on with my 6 year old son, Nico. Traits are difficulty in school, difficulty focusing and concentrating and sitting still in one place, especially to do busy work, not cooperating, not following directions, separating himself from the rest of the class and not interested in participating with anything that involves structure/ rules/ interacting with other kids, repeating phrases/ noises over and over, running up and down paths instead of playing with other kids at playgrounds, almost no attention span, wandering mind, plays mostly by himself... just to name a few. At the same time, he is a sweet, loving boy with a great sense of humor and very smart, above grade level in a lot of his classes. Finally there has been a little light shed on things for us. Upon a consult with his pediatrician yesterday, we were told that he could not be officially diagnosed with anything because he has here-and-there traits of Asperger's and Inattentive ADD, but not enough of either for a formal diagnoses. However, as his mother, I feel that AS explains him the best. They say AS is difficult to diagnose, so how do people know if their child has it? I also heard that they don't call it that anymore and it is referred to as just 'Autism Spectrum Disorder" or ASD. Is that what I should be calling it? My son is a mild case, and when you tell people that title, they immediately think they are extreme, and I don't prefer that. So what do I call it? Mostly joined on here for support from other parents with young children with this condition. Looking for support, guidance and just to talk to someone who is going through the same thing as I am. Really interested to hear symptoms and actions of other children and the parents' strategies to deal with them. Hope to make some new friends on here soon.
Thank you.....

Hi, just wanted to say welcome. I'm sure lots of parents will want to respond to your questions, but I just wanted to say that our puzzling 6 year old eventually grew up into a highly intelligent 29 year old, so there is light at the end of the tunnel!

Welcome to WP,

The diagnostic criteria and labels changed as of the newest DSM 5 (The manual they use in the U.S for diagnostics) Not all clinicians have moved to it, but that is the current standard. All the sub-categories under the AU (autism) umbrella have been relabeled as ASD with varying labels for severity. If you say AS, I really do not think anyone will chastise you for being out of date. People who have already been diagnosed that way continue to use it. You can say mild autism or high functioning autism or any number of things and they will mean different things to different people.

I don't know where you live, but typically where I live (the U.S )a garden variety pediatrician with a quick and dirty consult is not going to be able to do a proper diagnosis. If you can tell us what country you live in and what they used to diagnose your son, people can offer up opinions on whether you might consider getting a second opinion.

The rest of what you ask (symptoms, strategies etc.) is really broad and so asking specific things might get you more tailored replies. Autism is an umbrella term, so our kids have certain issues in common but there is a ton of variance.

My son did/does a lot of what your son does and my son is ASD. He also has a slew of executive function issues including issues with attention. Based on what your say about his lack of socialization that seems very ASD, but of course a diagnosis is more complicated. We got ours through the school district others get a private diagnosis.

Edited to add: Often pediatricians have a very superficial knowledge of ASDs and will eliminate if a child is too snuggly or smart or any other stereotypical trait that strikes them as not conforming to what their notion of ASD is.

Thanks so much, ASDMommy, for the info. Once you said you didn't know my location I realized I needed to add more info to my profile, lol....thanks for the heads up. I am in Maryland. After our appointment with the pediatrician he referred us to the Kennedy Kreiger Institute at Johns Hopkins University in Baltimore. He says the people there will help much more with pinning down exactly what is going on. We will schedule an appointment with them soon. Problem is, I already know what is going on with my son and he cannot be "categorized". All Aspies are different and so are their symptoms, there are no two alike, so what exactly are they trying to determine??? BUT if the doctor thinks it is best to meet with these people I will do it. I've learned a lot on the web, for instance, "stimming" which explains a lot to me that I didn't realize, and now when he does it I know what it is. His stimming is pretty subtle and doesn't look too much out of the ordinary (running up and down, up and down paths or sidewalks, rolling pencil back and forth in school...) so it was hard to know what he was doing was a part of AS. I will continue to research on my own and read as much as I can. I have a lot of hope for Nico. To begin with he is a mild case and seems to progress with age. In the meantime, I believe my job is to be the "hub" of communication between every adult that works with Nico. A lot of public school teachers are not very familiar with AS and I have been trying to educate them as much as I possibly can to make things smoother for Nico and them. I worry about him being in public school, but his doctor said it was the best place for him because being around the children will serve as good role models for him opposed to a special school or classroom where the children tend to be more challenged. However, a public school classroom consists of more than 20 kids and the constant prompting and one-on-one that Nico sometimes needs to keep focused is not always available. His teachers are great though and try to work with Nico as best as they can. I think that paired with patience and understanding on their part will help Nico thrive.
Thank you, ChrisP for your comment on how your son turned out great, that really does make me smile and offers hope for his future.

"Partial"...riiiiiiiight.

Personally, I don't see your average pediatrician being familiar enough with High Functioning Autism to do more than recommend a consult with a Specialist.

Two things: Don't let the word "Autism" scare you. You already know he's healthy and smart. You're just beginning to fathom that he may be seeing the world in a very different way than most of the people around him do. If he seems to think or behave differently than his peer group, it's because all of reality 'feels' different to him - it's more intense, sometimes overwhelmingly so - and because of that, the thought patterns and behaviors of 'normal' people seem equally as inexplicable and sometimes baffling to him.

Secondly, and this is not necessarily a consensus view, but a strongly held personal opinion: There is no such thing as "mild autism." Some of us are better equipped to develop more sophisticated coping mechanisms over the course of a lifetime and may be more facile at disguising our handicaps, but in the end, they are no less disabling. They merely hold us back in different ways than autistics who are less mundanely functional.

I'm not a parent, but with some sort of diagnosis here in PA, students get an individualized learning plan, which can include a one on one aide.

I totally agree, you went to the pediatrician because of social difficulties, and the pediatrician has just given you a label that applies to people with social difficulties. Nothing has changed. Actually two important things have changed. If the label sticks, it will probably open up some potentially helpful services to your son. The label also comes with some negative stigma, and profiling that can happen in some schools. You'll need to be on the lookout that he doesn't get placed in a class where the academic demands are far below his abilities, just because of the diagnosis. Aside from that, he's the same kid.

Willard, maybe I am too new at this to have an opinion, but at this point, I really disagree with you saying there is no such thing as more extreme cases of autism than others. I've seen some of these poor children, and adults, whose cases are interfering so much with their lives that they can barely function outside of their house. Then there are those children and adults whose cases are so subtle that it is hardly recognized, like my son. Again, I'm a newbie to this whole thing and that is just how I feel about it. And I totally agree with you about the pediatrician diagnosing. How can someone that spends no time with the child be able to say what he has and what he needs? He just can't. And trust me, I've taken that into consideration and by no means take the doctors opinion as law. Lastly, please know, I am NOT afraid of Autism. Maybe I came across that way because I am new at it, but I am not intimidated by it. I'm a great mother, very involved with everything that has to do with my kids, and I will take this situation by the horns and face it head on. I'll do whatever it takes to make my son's life as enjoyable as possible. The more I learn about AS and the more testimonials I read, I see that the kind of parents we are to our AS children can make all the difference in the world. I shed tears for those children who have/ had parents who didn't deal with having an AS child in the best way, those kids that didn't have the understanding and patience they needed ......my heart goes out to them. Nico, however, has a strong mother that will be there with him every step of the way. I'm ready. Please keep your information coming, I welcome it all and will use it all.......and thank you........

I think he (and I) were just advising you based on a very common reaction to the diagnosis. There's nothing wrong with feeling upset and scared about it. We were just trying to reassure you in case you were feeling that way. If not, well that's very mature of you.

Welcome! You've come to a good place as you will get support and insight, not only from fellow parents, but also from people on the spectrum. That is essential for navigating through this effectively, IMO

While I often agree with Willard, in this case I don't. I use "mild autism" to describe my daughter, because to simply say she is autistic to the unknowledgeable is confusing. And, honestly, her level of impairment is mild compared to many. But she is definitely not NT. So, if there is a need to divulge, I say that she is "mildly autistic." That usually prompts people to say "aaahhhh!" with an agreeing nod. Because then the odd little things they notice about her have a place in their heads.

That is not to say she is not impaired, and it is precisely why I will never call her "recovered" or "cured" as many parents of kids who start with a higher visible impairment do when the visible impairment diminishes. She is still wired atypically. She always will be. Her particular atypical wiring has allowed her to learn to adapt very well. She has very good compensatory strategies, and that is what has diminished her level of impairment, not a change in her root wiring. But because they are compensatory strategies, it means she has to work very hard to maintain them. So to mislabel her as NT would be a grave disservice to her and disrespectful to the amazing work she does.

When I was new to all of this, one of the most helpful things to me was to simply start reading things that were written by autists. It was very beneficial for me to gain an understanding of how things might look from my daughter's perspective. Once I could see things from her eyes, it was much easier to figure out what to do to help her.

The piece of advice that I most often give to parents new to the spectrum is not to feel pressured "to do everything you possibly can" to "cure" or "eradicate" autism, nor to "make your child indistinguishable from his peers." That will lead to nothing but stress for you, and may lead your son to believe he is broken, damaged or "less than." My advice is to research different philosophies and different techniques and try things that seem to fit with your child and your family. Accept your son for who he is and realize that he will always be autistic, but that there is nothing wrong with that.

Welcome!

Emile, I totally agree with you about not putting Nico in a "special class", and thankfully the doctor felt the same way. It is better for Nico to have peers and role models from an average class environment opposed to a special classroom that may have children that are more challenged. Nico is very intelligent as most AS kids are, even above grade level in a lot of his studies. We all agree keeping him where he is is the best. There was a time when I strongly felt he would benefit from a special class and now I see that it is just the opposite. NOW the next thing to tackle is if public teachers have enough patience and understanding to deal with him. Do I think these teachers are going to go home and do personal research on Asperger's in children to learn more about their student? I doubt it. So I worry about that mostly. Just like the parents, the teachers can make all the difference in the world, and what they know about AS is absolutely important. I'm thinking they know nothing about it. Scary.

VERY well said, InThisTogether. It makes me very happy and hopeful that people like you are here for me. Thank you just isn't enough.

Regarding "mild autism" I'm going to try to propose a compromise position. I think there are at least two factors, and probably more that go into how debilitating autism can be.
1) the degree of the social impairment - how much has the basic ability to understand the social environment been compromised.
2) the ability to compensate for this impairment - can you use intelligence, logic or other abilities to overcome the social deficits.

I think Willard was just emphasizing that second point. But I also think it's fair to consider the end result as a combination. There is a model of autism called the "tripartite model" where they consider very basic cognitive abilities, and say that having a combination of three specific cognitive abilities is what creates the social deficit, and an inability to effectively cope with it. Having just one of them or two, means you can use the other to cope. Anyway, it's similar to that simplified model I just proposed. /end nerdrant

The good thing about Nico is that unlike a lot of AS children, he is affectionate and can be pretty social. He does play by himself mostly but has been known to play with other children. He regularly plays with his brother and sister. His big hurdle is the inattentiveness and lack of focus in school. He has come a long way, now being in 1st grade, when he was younger and in PreK his symptoms were more extreme and harder for his teachers to deal with. So I'm hoping that things will bet easier for him as he gets older, so far that has been the case. He is a different kid than he was 2 years ago. I truly also believe that the natural supplements that I have him on are playing a part in the progress. People smirk at alternative medicine often but I can tell you as a mother, I have seen an improvement. I would rather have him on a natural treatment other than pumping him full of meds. He takes a yummy chewable called "Focus" that has ingredients in it that are commonly called "smart drugs" (not a drug, though.... it is natural). They are natural sources that can pass through the brain barrier, which a lot of things cannot do. They aide in concentration and focusing. I pair that with plenty of DHA (fish oils), also a "brain food". I figured it couldn't hurt when I first tried it and the results have surprised me. The testimonials from parents that have used it are also fantastic, one of the reasons I decided to try it. I've received notice from a few of his teachers that they have noticed a difference. I am very excited about this
On a different note, a new thing lately with Nico, and maybe you guys can explain this to me, is that he really hates anything that has a stain or dark marks on it. Never heard of this before. Is this a known trait of AS? I gave him a cup of milk the other day and he noticed in the bottom was a red kool aid stain (that I can't seem to get rid of). He was in tears until I changed the cup. Also very sensitive to dark marks in the white bathtub from toys scratching around in it. Hmmmmm......

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Last edited by EmileMulder on 17 Jan 2014, 10:50 pm, edited 1 time in total.

I haven't had time to read the rest of the replies -- just wanted to let you know that sometimes an official diagnosis can be helpful in getting the school to give needed help. The gold standard for diagnosing ASD is a test called the ADOS (Autism Diagnostic Observation Schedule). My understanding is that professionals have to have specific training in order to give this test, so not just anyone can do it. You would look for someone with "developmental" in the title -- developmental psychologist, developmental pediatrician, etc.