Frustrated with non-diagnosis

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Hi,

I'm new to the boards and have recently begun the process of testing on my 4 year old son for Aspergers. As an infant he began displaying signs of autism and sensory issues and as he grew older the typical signs of ASD became more and more evident along with a failure to thrive issue (in part because he also has cystic fibrosis and in part because of some dysfunctions of the family at the time). I ended up quiting work because he was literally dying physically and emotionally. Finally after a few episodes of combative behavior in his pulmonogist's office when anyone would just step near him and taking all of his behaviors at home (including an eating disorder) into account, his doctor recommended us to the psychiatric behavior clinic for testing on autism. After doing some research on my own because the appointments were so far out, all of his behaviors and characteristics matched up with ASD. So we studied up on ASD and how to communicate with him and it made life a little more easy.

To make a long story short, we have enrolled him pre-k this year (withdrew him from a special needs class last year after 2 weeks due to the failure to thrive issue and eating disorder), but I met with the school administration before school started because I felt they needed to be aware of his tendencies and potential meltdowns and how to handle them. Over the course of the last couple of months we also started my son on an herbal supplement called Attend by Vaxa that helps with attention support and it has worked wonders with centering him and pulling him back out of his world. We also pulled him off of all dairy products and put him on a mostly plant based diet which has helped TREMENDOUSLY with his stomach issues (we were able to take him off of his reflux medication). His sensory issues have also seemed to start subsiding, especially with his ears and with us touching him. This is all wonderful! But frustrating at the same time. He had his ASD testing a couple of weeks ago and the questionaire I filled out regarding my son and his behavior was completely opposite from the teacher. The way he acted throughout the entire testing period left the psychologists wondering what on earth I was talking about because even when they started popping balloons he was laughing and playing instead of covering his ears. The psychologist did mention his little 'tik' of sticking his tongue out and keeping it on his chin or pulling it in and out touching his chin and asked what that was...I wanted to say "uh Duh? That's one of his 'things'" And when I asked (at the ARD meeting) the teacher did say that he still runs to his safe place when they turn on the television and that there is SOMETHING different about him but she just cannot put a finger on it as his social skills are phenominal now for the most part. There have been a few meltdowns at school (the first one because they turned on the t.v. and another because they tried to get him some milk and he melted trying to tell them that he couldn't have milk and couldn't get himself back under control). But for the most part his behavior is excellent.

We go at the beginning of December for further testing (3 days) outside of the school system and through the children's hospital in our area, but this has me a bit concerned. I know what it takes to make my son function on a day to day basis and it's a lot of work that doesn't go along with a NT kid! But I just got told by professionals that I'm making things up in my mind not only by a psychologist but also a PA (both of whom saw my kid between only 20 minutes and 3 hours). Are we going to get there and have the same results? Is it possible for Aspergers to wax and wane so much so in a 4 year old that it can fool a psychologist? Have I kind of shot myself in the foot with obtaining a diagnosis with the two solutions of diet and a supplement that appear to have had such dramatic results? I know that a diagnosis isn't everything, but then again, it can also mean the difference between life and death when he gets older as we've all seen in the headlines! And it makes a huge difference in how people communicate with him and try to make logic out of the dyslogic that often can enter into his mind. I'm very frustrated at this point and not real sure where to turn for some sort of answer.

Thanks!
Pattimae

I think a 4 year old aspie could easily fool a psychiatrist.

I'm new too and in a very similar situation, though we haven't actually had any tests yet. Our son is almost 4 1/2.

At our first parent-teacher meeting, his teaching confirmed some of my suspicions, so that was both relieving and disheartening at the same time.
But, other than that, any time I have mentioned possible developmental issues and behavior issues to our pediatrician or friends, they remark that he is healthy, smart, well-behaved and don't know what I'm talking about.

But, I like what you said--that the level of work we put in to maintain our children's ordered, behaved world is what they don't see! The production and energy that completely drain us just to get our child out the door is what they don't see and never will see. They don't see those daily in and out 'quirks' that make our child so unique. They don't go thru the irrational meltdowns that happen because you neglected to park next to the blue car and blue is their favorite color.

So, trust your instincts. And hopefully your full testing goes well and is thorough enough to catch more than just a child acting nicely in a new situation. I can see my son doing the same thing. He is sensitive to noises and other things, but I can see him laughing and being silly and running around because--hey, here is a new person and I want them to like me, so I am going to pretend. Then, later he'd probably tell me--'I didn't really like that.'

Hi

When my daughter was 4yrs, I doubt very much that she would have received a diagnosis of Aspergers, although the signs were there since she was born. I didn't recognise them as anything significant and my health visitor wasn't concerned about anything. She was almost 5yrs before I became aware of the possible presence of an ASD. Before that, I thought there may have been a possibility of an ADHD diagnosis, if anything.

Also, she can change from one day to the next (from one minute to the next in fact). She spent a day and half a couple of weeks ago being totally unremarkable to an onlooker (remarkable for us as her behaviour was impeccable). But, then she stepped into my parents' house and went back to being her usual self again. And although there are problems with concentration, social skills, etc, at school, she's nowhere near as difficult to deal with there as she is at home. I'm convinced that being wound up all day at school has an effect on her outside school, When I collect her, she's fit to burst and I'm the punchbag (not usually literally, but sometimes).

I'm frustrated too. My daughter doesn't have a diagnosis yet. The waiting list for assessment here is so long that it will be 2013 before she even sees a paediatrician. She's been seen by a speech & language therapist and it will be a few months before she gets a proper assessment from them. Other than a speech & language triage appointment in June, absolutely nothing has been progressed. I'm just about tearing my hair out and on the verge of pulling her out of school to homeschool her, even though she's so much work.

I'd advise you to write everything down in a bullet-point list and show it to any health/education people you speak to about your son.

Good luck

Is this in the U.S? Was the evaluation done by the school district?

They really want to see functional issues in more than one environment before giving a diagnosis. Based on what I have seen, If they don't see clear functional issues in their environment they tend not to diagnose; and if the problems are not severe enough to create immediate problems for them, they tend not to diagnose.

I think Aspergers tends to be diagnosed around 6-9 yrs old or so, for that reason.

My child had more obvious social issues than your child that clearly impacted how my son would need to be educated, so my son got a relatively quick diagnosis, given the byzantine procedures. That said, we didn't get a whole lot of services and they kept saying that he wasn't that bad whenever I raised issues of concern. I did my best to handle what I could at home.

Now that my son is in first grade, they are the ones complaining about his issues and they are more generous with services, because his issues are impacting them more obviously.

My son was diagnosed at age 7 and, while the signs were always there, I really think it would have been impossible for anyone to be absolutely sure what they meant when he was 4 or even 5; it wasn't until he was 6 that the social deficits started to pop out, and for some high functioning ASD kids that line comes even later.

So, what all this back and forth probably all means is that your child is high functioning, and able to adapt well enough for most of the skills he is currently expected to have, and in the types of controlled environments in which testing usually occurs. Once the other kids hit the next developmental leap, however, the answers - whatever they are - should get more clear.

I know no one wants to hear they probably just have to wait, but that may be exactly what you'll have to do.

Meantime, you can parent him on the assumption that he is ASD, assuming that works better for you, and work with him on the types of things you pick up from the website. Let him be who he is, and parent him accordingly. Kind of what every child who isn't in elementary school yet should get

Does the further testing include the ADOS?

When my son was assessed, I took in a lot of supporting documentation. I wrote down a detailed description of why he was unsuccessful at two preschools, and also brought in emails between myself and a teacher at the next preschool. She had described some behaviors she was seeing at school, and I replied with what we were seeing at home and how we handled it.

I would write a letter to the psychologist detailing all the behaviors you see and all the things that you do in the course of a day or a week that are beyond what you would expect to have to do for a typical 4 year old.

I also agree that you might end up with a diagnosis later. My son was evaluated with the ADOS at 2.5 and declared strong-willed but not autistic. At age 5 the ADOS was performed again (with a module of the test due to his age) and clearly scored in the Autism range, consistent with Aspergers.

Get started with a social skills class and ABA in the meantime, if you have the means to pay for therapy.

I do really feel your pain. Try not to take what the evaluators said too hard. Unless they actually said outright that they think you are making stuff up then what they probably really meant was that they just aren't seeing the same things you are seeing. Obviously they have nto spent enough time with him to really know him. I was afraid of this too. When my son was one on one with the evaluators, he was great; charming, funny and bright. It wasn't until they went and observed him in the classroom that his differences were apparent to them. As others have said, this age can be tricky because it is difficult to differentiate between a kid that is maybe socially and emotionally immature, one that has developmental delays or one the is on the spectrum (or any combination thereof!). While he may not reach the school's criteria for a diagnosis now, he may later on down the road and the fact that you have already brought him to their attention may be a benefit later if more problems crop up at school.

Many others have reported marked decrease in severe symptoms when dietary problems are addressed. Don't regret having figured out that piece of your son's puzzle. He is surely much better off for it! Hopefully at the children's hosptial you will find knowledgeable staff who are aware of the nuances of ASD and will help you get the right information that you need.

You might also consider videotaping a serious meltdown or other behaviors if your child has them. There's nothing quite like seeing video to make people sit up and take notice.

I agree with suggestions for behavioral assessment across ALL environments (school, home, clinic).

I've encountered issues at school where my 4YO son appears symptom free except for obvious "separation anxiety" (a misdiagnosis) -- this is because he's not being challenged to apply himself ("LEARNING") in any meaningful way. So of course he's delightful, compliant, well-behaved, and not melting down the way we see him act out at home when we expect him to apply himself (learn how to dress / undress himself, verbalizing).

We're in the process of working with a behavioral psychologist to conduct assessments in multiple environments. I suspect if you have your son evaluated across all environments, it will become clear what situations and antecedents trigger what behaviors/reactions.

Hang tough -- my thoughts are with you!

I apologize for it taking so long to get back with you all. I have a tendency to look up and realize that a week or two has passed since I last pulled my head outta the rat race Thank you guys for all your supportive comments! It's nice to see other parents going through the same issues and read through your comments that acknowledge the frustration of this.

Zetta - His further testing will include the CY-BOS (Children's Yale-Brown Obsessive Compulsive Scale), NICHQ Vanderbilt Assessment Scale, Pearson Social Skills Rating System, ASAS Checklist, BRIEF-P (Behavior Rating Inventory of Executive Function), and a Sensory Checklist.

Thank you all once again and I will keep you notified as I get more information in December

Hi there
In BC, kids with ASD have to have the ADOS and the ADI administered.
T