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Hi. I am new to the forum and have concerns about my son. He is 4 1/2 and was "tested" by a psychologist, speech therapist and an MD when he was 3 for ASD. The conclusion was that he was not. I am convinced however that he has Asperger's and I am not sure where to turn. A few of the things that have me convinced are the following: His lack of eye-contact; he toe-walks; he is still not totally toilet trained; he struggles with interaction with peers; he carries on with one-sided conversations; everything is literal to him; he is VERY gifted when it comes to reading; he has several "obsessions"; he does not know how to calm himself to go to sleep.... I could go on, but these are just a few things that stick out to me.

The psychologist we saw when he was 3 seemed to blame most of his unusual behavior on the fact that I stay home with him and he had not been to day care to "socialize". The MD on the other hand felt that he was probably Asperger's but would not be diagnosed until about age 8. I am just wondering where to turn as I am very concerned about him entering kindergarten next year for many reasons...

I guess I am wondering if these traits sound familiar to others. Thank you in advance.

And then another psychologist may blame the behavior on the fact a child was in day care too much and didn't get enough one on one interaction.

Continue to work on toilet training him, and put him in a co-op play group. Co-op because parents are expected to participate, and this will allow you to help him interact a little more with the kids. You can prompt him to take more of an interest in other people, for example, "Oh look, Tommy has a train, isn't that neat? Why don't you ask Tommy where he got his train."

If he has AS you just need to explicitly teach him how to interact with other people.

Find another doctor! The characteristics you describe do sound like Asperger's or HFA but it can be tricky to really understand these conditions. Are you in the States? I believe (please someone correct me if I am wrong) that by the time kids are 4, the public school system is required to evaluate them if there is a concern of autism, Aperger's, learning diability... If your concern is really about how he is going to cope in Kindergarten, then what you may need most is an evaluation from the school district. It matters not what a doctor says from the point of view of getting services for your child from the public school. It only matters what the school evaluation reveals. 4 1/2 is not too young, the doc that said you should wait til he is 8 for a diagnosis is a quack in my (layperson's) opinion. Early intervention is what it is all about!

The shrink sounds like a quack to me.

Seriously, my life has proven to me, over and over, that paper credentials, in themselves, are meaningless. If you are NT, this is probably a hard concept for you to grasp, since the world you take for granted teaches you that those little bits of paper are all important. But there are many ways to get the credentials without being any good at what you do. If you open your mind to the possibility, you will discover there are a lot of people with formal credentials who are terrible at what they do. I was a professional genealogist, without any formal credentials, and I wasn't as good as some of the credentialed genealogists out there - but I was miles ahead of others. And there were non-credentialed genealogists who were better than I was, as well as those who were much worse.

Your son sounds somewhat like me at that age (I didn't do the toe walking or have toilet training issues - but I banged my head a lot and twirled and paced endlessly.) It took me until last fall to figure it out, but I am an aspie. This is the first place I have ever felt like anything other than an alien. Even on writing sites, where other people come and say, "Thank God, I thought I was crazy until I found this place!" I don't completely fit in. The writing quirks, yes; the rest of me, no. I thought of myself as an outcast among outcasts - until I found Wrong Planet.

What do you do for your son? Well, at that age, the formal diagnosis would have some uses - for example, it would give you more leverage with the school system. But even without a formal diagnosis, you can begin to work to understand your son, and to help him as best you can. Just, please, don't fall into the trap of assuming he must learn to be "normal" - at best, he will be crippled trying to be normal, because that is not how his mind works. Although society isn't really tolerant of this yet, it would be far better for us to work out what we're good at that others aren't - and learn how to do that as well as possible. That is something unique we could offer, instead of being a mediocre misfit struggling to keep from suffocating.

Not hard to grasp at all You and me came to the same conclusion - the docs in the OP are quacks! - while we were posting simultaneously!

I would definitely contact the school system and let them do an evaluation. That way your son will get the support that he needs to be able to succeed. The psychologist you went to must know nothing of AS if he said your son did not fit it. I am a stay at home mom too, and my son was diagnosed at 2.5. He was a very late walker, so that is what sent us on the path to find out what was going on with him. He was placed in a special needs pre-k program with the public school system at 3 yrs old. And guess what? He still has ASD. He has made big improvements, but I don't think it has anything to do with you staying at home with him. If anything, it has probably benefited your son to have you one on one.

My advice to you is to keep educating yourself about Autism Spectrum Disorders/Aspergers. As far as the potty training, my son got trained right after he turned 4. Your son may just have difficulty in being in tune with the sensations in his body that tell him he has to go. Or, he could just not want to stop what he is doing to go to the toilet. What worked well for me, was just trying to take my son on a schedule. I would offer him a reward (a skittle or m&m) to at least make an attempt. If he did go pee or poopoo, I would make a huge deal out of it. I really had to just stay on him and just make him aware that he needed to go to the bathroom. If he has an accident, don't make a big deal of it, just point it out to him, and tell him that he needs to go to the bathroom instead. Also, if he is wearing pullups still, that could be part of the problem. It is just so convenient to just go in the pullup. So, I know it will require cleaning up messes, but in the long run, he will be more aware of what is going on if he is wearing underwear at home.

Sorry, didn't mean to go off on a tangent. Welcome to Wrong Planet! Hope you will keep coming to find answers. We may not have them all, but this is a great place for support.

I'm new to the forum too. My daughter was just recently diagnosed with Asperger's at 8 1/2. But she has been receiving interventions since she was 3 1/2 for an unspecified developmental delay. My state Intermediate Unit did the initial testing, evaluation and implemented interventions immediately. In our situation, they worked wonders for our daughter in social and self help skills including potty training.

Obviously, she is still AS but without these early interventions the transition to school would not have gone well for us.

The IU deals with early intervention before school age. At 5years old, the school district takes over. Request all evaluations and testing in writing. We've had trouble with our school district over formal educational testing because 'she's doing fine academically'. Their tests discovered a rare but significant learning disability that would not have been addressed otherwise.

Our family doctor would write the prescriptions for my daughters physical therapy every year but maintained that she'd 'grow out of it'. They call it 'practicing medicine' for a reason... Finding a developmental pedatrician with experience in diagnosising Aperger's was so helpful. We needed to go to Children's Hospital of Philadelphia to get our diagnosis after 4 years of school district and local doctors basically talking out their butts.

There is help out there - sometime you just gotta dig a bit deeper!

So TRUE!

Every doctor does not graduate at the top of his class. Just because your family doctor did a rotation on the oncology ward doesn't make him a reliable source on current cancer treatments. And passing a class on Autism with a C- average certainly doesn't qualify anybody to provide an accurate diagnosis on Asperger's. Just like any other service professional, you need to shop around for the one that provides the best service. Any doctor that gets defensive because 'you did your research' or makes light of your concerns, telling you you have 'internet hyperchondria' needs replacing. You and your family deserve more respect and plain old common courtesy than that. No doctor should discount or ignore your concerns.

some doctors are just unwilling to make a diagnoses of AS at this age. some are not well trained enough. in my case my ds had to be observed by different people and in different environments for them to get the information they needed. i am also a stay at home mom so this proved difficult since they will usually take the observation of the parents, one of the school or daycare and what they see themselves in their office. that is how it is done here and apparently there are specific rules about it. i was not able to get a diagnosis until ds was in school even though it was blatantly obvious to us at age 2(which is when we got him) that something was not right. don't give up and keep working with son the best you can. learn as much as you can about AS and parenting a special needs child. if you can get in to see a psychiatrist with him or a pediatrition who specializes in these things that will help. they have different guidelines to follow than a psychologist and can make diagnosis with a lot less testing.

I am amazingly overwhelmed by your responses! Thank you. I have read each one and I am really taking in the information. I really appreciate it. It is the first time since my son's formal "testing" that I am really stepping back and realizing that something is amiss. I know my husband and I trusted the doctor's opinions way too much. The difficult part is that we live in a very rural area with very few choices of doctors and specialists. I don't even know if our insurance would cover us going out of network for a different opinion.

We have just started having my son evaluated by the local school district (yes, we are in the U.S.). He just took the Dial 3 assessment and scored off the charts (ages 5 and 6) for everything but social skills and self help (in which he scored in the 34th and 8th percentile respectively). I personally think he is the most intelligent individual I have ever met .... but I digress... I am experiencing the same type of opinion so far as one of the posters said...that he is fine academically so there is nothing they can do.

We take him to taekwondo twice a week and I see how much he struggles there with fitting in and understanding what to do...it terrifies me to think of him in kindergarten just being lost. I am going to dive in and read, read, read and educate myself about this.

As far as his toilet training, he is in underwear all the time except when he needs to have a BM. Then he asks for a diaper. It's a very maddening process. He is refusing the toilet for this totally. He insists on lining up a specific bag of toys on the couch, getting fully undressed and then must stand and play with the toys to have a BM. Even getting near the bathroom is out of the question. It feels as though I have tried everything with him on this and nothing is working so far.

The poster that mentioned pacing - that really hit home with me. My son paces and talks endlessly about Star Wars while walking on tip toe.

I really appreciate those of you that replied with your own experiences. It is helping me sort things out. I apologize that I did not respond with people's screen names. I would like to, but being so new I couldn't remember them all, but I appreciate each reply.

No child should be "diagnosed" or "ruled out" without an actual TEST that helps to focus the evaluator's attention on all aspects of the disorder. When I do an educational diagnostic evaluation for the school system, I use the Autism Diagnostic Evaluation Scale, the Gilliam Autism Rating Scale, a structured interview with the parent(s) and teacher(s), and an observation, preferably in a non-structured setting in which the child is allowed to interact with peers. If a clinician does not use the ADOS in the evaluation process, their diagnosis should be questionable. For example, I have seen children who had very high scores on all measures who were ruled out by others due to the parent's comments that the child converses with others. However, when evaluated, their "conversation" is perseverative and one-sided with limited use of eye contact (although the parent reported earlier that the child did make eye contact- which they did, but not in a typical manner), facial expressions, or gestures. Yes, they played, but only in a stereotypcial manner such as re-enacting movie scenes over and over.

Conversely, I've seen children who would seem to have Autism to a casual observer but who were found instead to have only sensory integration disorder, or selective mutism. That structured assessment with the ADOS allows us to 'set up' social situations, and some children that would normally be withdrawn in group settings due to severe sensory issues or anxiety may display great social skills in a quiet, one-on-one setting. The ADOS isn't completely objective but it is more objective than a simple observation or interview with the parents.

Thank you matrixluver. Does the child have to be actively attending public school to be evaluated in depth or can they be evaluated before entry to the schooling system...?

Last edited by RLW on 04 Feb 2011, 10:09 am, edited 1 time in total.

if you live in the US, children not yet in the public school system are still covered by the IDEA laws, each state has an Early Intervention program that usually runs from birth to about age 3, after which the local school district takes over. if your child is too old for EI, but not yet in public school, you can still talk to your local school district and request an evaluation.

each state also has to have a "child find" program to identify, locate, and evaluate children up to age 21 with disabilities. here in michigan its called Project Find, but states call it different things. you can contact the program in your state and they will refer your child to the appropriate place for an evaluation. states can also extend the age limit beyond 21, child find and special ed services in michigan go to age 26.

Thank you azurecrayon. I am in MO and will be making some phone calls.

I am very much afraid you're making a mistake with this assumption. I was labeled a "genius", because I could read Reader's Digest by the time I entered first grade. My fourth grade teacher didn't believe I could really understand what I was reading - so she gave me a college textbook published so recently she could be sure I hadn't run into it somewhere. She had me read it, tested me on what it contained, and then informed my mother that I was reading at the level that would be expected for a senior in college.

But this actually led to two very negative results. First, I was bored to death. I was a genius, they couldn't do anything for me - but they wouldn't let me out of classes, and I was too "emotionally immature" to be permitted to skip grades. I learned to hate pointless work, to evade it as much as possible in any way I could think of, and to be lazy. Even when they caved in a bit, such as when they gave me independent study for freshman English, I was bored. I overheard my teacher complaining in the "teachers' room" about all the sleep she was losing trying to come up with ways to "challenge" me. Meanwhile, I'd get her assignment each week, ignore it until the night before it was due, then whip out the required paper and get an A on it. Every week.

Lest you think it really was impossible to challenge me - at the very same time I was doing independent study for this teacher, I was taking a junior/senior elective English course - one I had to battle for the right to take so early - and the teacher there kept me working my butt off for six weeks, with his regular class assignment. What happened to one of the very best teachers I ever had? While I was still in that class, he came in one day and told us that, at a school committee meeting the night before, he'd confronted them about everything that was wrong with the school system, then quit before they could fire him. He was right about what was wrong with the system, too. Precisely because your son is advanced academically, the system is designed in such a way it will use him - for the good test scores he can churn out to improve their average - while it grinds him down.

The second problem? Because I was known as a "genius", I was always hearing "you're so smart, why can't you do / understand this or that?" It actually led to more pressure being put on me to be what I was not, a neurotypical kid. I'm sorry if I'm depressing or overwhelming you, but you need to understand how these things work out, from your son's perspective, if you are to have any hope at all of keeping the poor kid from being crushed by it all. The experts tell you what they see on the outside, but they don't - and can't - tell you what it is like from the inside, and how it really works for us. They measure their success by how much they manage to cram us into a mold we were never designed to fit into. I got high test scores, so the school administration could claim they were doing their jobs well, even as they taught me to be lazy, even as they so overwhelmed me with pointless make-work that I would be forever crippled even for jobs I would otherwise want to tackle, because I could no longer stand to endure even a single, small pointless demand on me.

theWanderer - Wow! Thank you for sharing what you have experienced. Wow...it pains me to hear your struggles and pains me to think this is what my son may experience if he goes to school. I say if because home schooling is something I have not ruled out.

Your early reading abilities sound a lot like my son. He is reading very advanced books at 4 1/2 and was reading things like Dr. Seuss books at age 3.

Thank you so much for sharing!