Mom of 5 year old boy

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Hi everyone,

I just joined this board a couple of days ago after lurking for a few weeks. My story is long, but I am going to try and give the VERY short version. LOL

I have 3 kids: 19, 6 and 5. My five year old may or may not have Aspergers. I am not convinced either way.

He was dx'd PDD/mild autism at 20 months by a psychologist through Early Intervention after my insisting on several evaluations by them. After the third eval, he was so dx'd.

The dx proved to be incorrect. He is not autistic. But he does have some characteristics of Aspergers. He also has characteristics that are soooo not Aspergers. Either way, he IS at times different.

So, I am here to learn, read, ask questions and determine whether my son is truly Aspergers or not.

Jan

Hello.
Our doctor's son has dysgraphia which has similiar symptoms to AS but is not. You might want to check that out.

I've been meaning to post this for a while:

Some Symptoms & Characteristics of Aspergers

Here are some characteristics you may find helpful in your quest for information, although some of these characteristics do not apply to everyone, because some cases of Aspergers are not as extreme as others, and some more extreme, it is always best to get a diagnosis from a professional in the field of Autism. We offer the information we do at Support4hope, not as a diagnosis, but purely for educational purposes only, and we hope you find it helpful. Some characteristics may not be as complex, some more than what we have listed here, this is just a little bit of general information we have obtained through our research on this topic.

* Difficulty in accepting criticism and/or being corrected.
* Strongly like, or strongly dislike certain things, for example, certain foods.
* Acting in a somewhat immature manner.
* Excessive talking.
* Difficulty in correcting someone else for mistakes without appearing to be insensitive or harsh.
* Sometimes appearing shy and withdrawn, but willing to speak when spoken to.
* Clumsiness and balancing difficulties.
* Difficulty sleeping.
* Sarcastic, negative, emotionally numb, very criticizing.
* Low or no participation in conferences, group meetings, etc.
* Great concern about personal working area.
* Problems addressing others due to issues with trust.
* Intense concern for privacy
* Difficultly in distinguishing intimate relationships from friendships.
* Difficulty working as a "team."
* Low to no sense of humor.
* Writing lists to stay on schedule when things get hectic.
* Very weird sense of humor, sometimes not found very humorous by others.
* Lacking in ability to greet others in a warm and friendly manner.
* Uneasiness with completing a project for fear of failure.
* Perfectionist.
* Lacking in ability to show compassion, sympathy and sincere happiness.
* Shows little or no reaction when being criticized or patronized.
* Difficulty accepting compliments.
* Difficulty maintaining eye contact.
* Difficulty starting projects.
* Interrupting in the middle of a conversation.
* Extreme reaction to a schedule change or routine.
* Repetitive behaviors, and if the step-by-step scheduled routine is interrupted it causes confusion and sometimes anger.
* Certain preferences of personal items, such as always picking the same clothes in stores when making a new purchase, using the same blanket, not wanting to throw away a particular pair of shoes.
* Easily manipulated.
* Lacking initiation when in groups.
* Not being able to determine public and personal and public hygiene, for instance, someone may pick their nose, clean their ears in front of others without realizing most people do not do those things in public areas.
* Very verbal, blunt.
* Raising of voice during stressful and frustrating situations.
* Difficulty hiding true emotions such as anger and sadness.
* Lacking in the ability to relax from activities.
* Verbalizing strongly on likes and dislikes.
* No interest in tasks that doesn't draw personal interest.
* Almost always totally serious.
* Difficulty in determining how someone else would feel given the same situation.
* Quick tempered.
* Having a different way of playing games with others, and is sometimes taken the wrong way.
* Fixating on really bad or really good experiences.
* Difficulty with constant anxiety, worried about performance and being accepted, despite commendation and special recogntion.
* Clumsiness.
* Limits one's self with pursued interests without thinking of other things that can be explored.
* Confusion during stress.
* Repetitive simple routines.
* Nail biting, fidgeting nervousness and anxiety.
* Strong sensitivity to sound, light some tastes, odors and colors.
* Difficulty expressing emotion.
* A need for finishing one task before starting another.
* Difficulty in determining time limits.
* Constantly asking of questions.
* Difficulty with negotiation.
* Does things without thinking them out well first, or considering consequences.
* Impulsive.
* Mental shutdown, or total burst of anger when "pinned in the corner" so to speak.
* Often viewed as vulnerable by not responding when being harassed by classmates or co-workers.
* Difficulty concentrating to write essays, reports etc.
* Difficulty talking to classmates or co-workers as "pals."
* Very low assertiveness in topics not interested in.
* Very easily distracted.
* Self injuring behaviors.
* Difficulty in starting or changing conversations.
* Thinking on a "one track mind" type basis.

Thank you mommyofone. I looked up dysgraphia, but most of the information seemed to describe children older than my son. It seemed to have to do with handwriting, and difficulty writing words and mixing up letters, but Justin is only five and not yet in K, so I can't really apply it to him. He does have trouble holding a pencil though, and drawing is not a strong point with him either. In fact, the only thing he draws is himself, and only his head w/eyes, ears, nose, etc. If you ask him to draw anything else, he says he doesn't know how, and he won't even try.

Do you have any idea how dysgraphia might present in a younger child? Does the non drawing thing sound like an AS trait?

Thanks,

Janis

the drawing thing, just brought up memories of my son ~ he loved to draw when he was little ( between the ages of 4 and 7)......he would draw very intricate pictures ~ i remember in particular the picture he drew in 1st grade of his bicycle...he had included the gear shaft, the pedals and even had attached the chain to the back wheel.

06xrs thanks for that extensive list, I mentally ticked more than half of them for my husband, and the same for Claire, although some are different, also Ben has some of them.
There are so many of them.

As far as drawing is concerned, Ben couldn't draw free hand but could draw using a ruler. he would get very frustrated when drawing. and Claire would draw very well and would try anything that got her fancy at the time. But other aspies might not be the same.

If I understand correctly, he was dx'ed by a school psychologist for the early intervention program?

If so, I so very strongly recommend a private dx. The school psycholoigist are well meaning but they look at how his behavior/habits/disbility/whatever-you-want-to-call-it effects school or pre-school life. Life is so much broader than that.

Maybe it's just this area but....

...I was told my son was not LD in second grade. It turned out the school psychologist knew he was indeed LD but he didn't meet the school defination of LD. Yet. So she had to say...no LD. By 4th grade he was failing badly enough that he met the criteria and started recieiving services but it was too late, too little. He really should have had tutoring starting in 2nd, which I would have LOVED to have known and would have happily paid for. I just though no LD meant no LD (not he has an LD but since its a money issue, and we only remediate the bottom 3% and he's at 4%, tough luck.)

...the same thing happened with speech. Technically, no speech problem. The Speech Therapist though, did explain that he really needed outside service since he was very, very behind, just not in the bottom 3%. Bless her soul.

...this same speech therapist, off the record, told us to take him to a private OT to be tested as we were told he didn't need OT by the school OT. The six months of private OT did wonders for him.

I beleive the first step in looking at what needs to be done, or should be done, is to get a clear picture of where one is at. A private eval will really tell you where he is at.

BeeBee

My story is a little confusing. Justin was actually dx'd by a psychologist through the Early Intervention program at 20 months. He was dx'd PDD. This dx quickly proved to be incorrect, because once Justin's language started coming in at just 2 years old, his language was communicative and appropriate. He was also social, had great eye contact, initiated interaction with others, was reciprocal, etc. I could go on and on.

I have since had him evaluated privately several times. Develop Ped @ age 2.5 said she was on the fence. She didn't think autism, but keep an eye out in future for Aspergers. Pediatric Neurologist @ age 2.5 said not on the spectrum at all. Child psychologist @ age 3 offered to UNDIAGNOSE. I refused because I knew the school district would no longer provide speech services if he was undiagnosed. Though he was still delayed in language, I knew the scores were not bad enough that the school district could discontinue services. (BTW, this may have been my biggest mistake).

At age 3, Justin attended a regular preschool, but had a shadow. He did great, and the shadow was gradually reduced. His teachers felt he could do regular preschool at age 4 without any supports. By this time, his speech scores and educational scores were within normal limits. He was doing GREAT! However, he was still delayed socially, and I felt he still needed guidance with peer interaction. We considered having Justin do the 3 year old program again due to immaturity, but instead I opted to place him in an integrated 4 year old program. I also had him privately evaluated again that summer by a different developmental pediatrician who also said he was not on the spectrum.

This is where all the trouble began. For the first couple of months I was told he was doing GREAT in the integrated 4 year old program! From my own observations, this did seem to be the case. Unfortunately, he was getting play therapy once a week from a psychologist who turned out to be a real whack job! She got it into her head that if he was once dx'd, regardless of how long ago, then he MUST be on the spectrum. She decided, on her own, to set out and prove my son had Aspergers Syndrome. She put this into the teachers head and the speech therapists head. All of a sudden, my son was no longer doing well in school. And this psychologist had decided I was a parent in denial, and pretty much tried to keep me at a distance regarding this whole thing. She implemented a behavior modification plan without my knowledge. She attempted to administer the GADS without my consent. She started grouping him with autistic children for play therapy, despite the fact that his IEP specifically stated he was to receive play therapy in his classroom with his peers.

His teacher had a poor attitude as well. When I observed Justin making efforts to interact with the kids (appropriately, I might add), and another little boy was not responding to Justin, I asked her why someone didn't step in at this point and help them out. After all, I said, I placed him here for you guys to help him interact with the other kids! Her response was, "Well, Justin doesn't know how to get the attention of the other kids." As if to say, there isn't much we can do. This is just how it is!! This psychologist also went behind my back and informed the school district that Justin should be evaluated for Aspergers. the way she spoke of him, you would have thought my son was seriously impaired. It was ludicrous.

Anyway, I pulled him from that classroom, and requested a different psychologist. He was placed in another integrated setting, but with younger kids, and the head psychologist of the school took over Justin's case. What a difference!! He did great in the new classroom, and the new psychologist thought Justin was great! He felt he wasn't able to give a definitive opinion of whether Justin had Aspergers or not. He felt, like me, that some behaviors seemed indicative of Aspergers, but many were not. However, unlike the former psychologist who was going along with the school districts's recommendation to have Justin dx'd Aspergers and placed in a self-contained classroom, he felt Justin could attend a regular K without supports, and agreed I should wait before running out to get a dx.

Anyway, I decided to follow my own heart, and I held Justin back a year. He will start K next year. He has a late summer birthday, and he clearly does better with the younger kids.

Anyway, like you said. Life is much broader than just the classroom, and outside of the classroom Justin is sooooo normal. Life with Justin is like life with any other kid, thought compared to my older two, he is actually more layed back and easier to reason with!

But, he really does have difficulty interacting with peers. He does so much better one on one with a peer, and usually does better with a peer who will take the lead. He is obviously anxious around his peers, and the more peers the more anxious. This year in preschool, so far his teacher is telling me that he is interacting nicely with the other kids, but sometimes I see things that his teachers may not notice.

I don't know how he will do in K next year because the classes are so HUGE! Right now his preschool class only has 14 kids. In K, there will be AT LEAST 20, and could go as high as 23!!

Also, after reading your post I realize I am going to have to try and find private OT for my son. He definitely needs help learning to hold a pencil properly.

I guess what it comes down to is when someone looks at his dx (PDD) or suspected dx (Aspergers), they see behaviors that just arent' there! They make assumptions about him that aren't true, and they expect LESS of him and look at him differently. He SENSES this immediately, and I swear it does not help his self-esteem. That is what I worry about most...my child's self-esteem. And of course, I can not overlook his other oddities. The repeating of commercials, the anxiety around peers, the difficulty regulating excitement.

I just want to make sure I do not mistakenly get him dx'd again unless he is truly Aspergers. I know these days the definition of autism has widened greatly, but I think in some instances it has gotten out of hand and the issue of whether a child is on the spectrum or not is left to the evaluators discretion, rather than clear cut data and guidelines. I don't want a dx on my son's medical records for the rest of his life unless he clearly meets the requirements of a disorder.

I guess I could reason, well he has some Aspergers traits, therefore we can dx him with Aspergers. But by the same token, he has some (many) NT traits, so why can't he be NT with some differences? Does my son really have a disorder? Will he have major difficulties in his life due to this disorder? I know once he attends school, things may become clearer, but even then how do you know. My oldest son's behavior in school from Pre-K to 3rd grade was horrible, but he did not have a disorder. Actually, he was quite gifted. So how do you know when it's right to if and when label your child?

Anyway, thanks for listening to this long post. I am probably going off on a tangent here and just thinking out loud.

Janis

Ah, Janice. Not a tangent (or a rant) at all and even if it were, here's the place to do it! You have been though a lot with your little guy.

One does have to be SO careful with labels. The schools often don't provide services unless there is some type of label and then others misunderstand the label and, as you said, see things that aren't there. Danged if you do, danged if you don't.

Two points that really stood out to me--how do you know what's best and what will the future bring (ie major dificulties?).

All we can do is what feels right at the time. And as we get more info, we can do better. Its frustrating. I feel like a need to be an instant expert but that isn't gonna happen so then what? Try our best, I guess. I've heard that children don't need a perfect parent, just a "good enough" one. I take confort in that 'cause I'm certainly not perfect!

I had a book with vignrttes about parenting special needs children. It was really good. I borrowed it out and there it went! Anyone, one of the chapters was about the future. The writer felt that we only see the bright future for our NT children...we think about the wedding, the promotions, the college graduation. We completely overlook the divorce, the firing, and the failed businesses. She said that it is easy for parents to only see the potential hard times for our special children. That we feel like we need to know the whole future NOW so we can prepare our children for it. BOTH views are wrong. BOTH sets of lifes will have roses and ruts. I often need to remind myself of that.

Anyway, that's my tangent.

When you do label? I did when the potential gains of the services it would get us outweighted the fighting and educating I had to do of people who wouldn't see past the label.

If I were wealthy like Bill Gates, I'd not need the money to buy the services but since I'm not, we labeled.

Barb

teachers will either read your child's file voraciously, or not........some teachers believe that reading a child's file immediately taints their view of the child. other teachers believe that the file is their best friend. there's not a whole lot you can do to prevent a teacher from reading or not reading your child's file. the school cannot do anything ( legally that is), without your consent.sometimes school systems will file suit against yuo, because they feel that what they want to do is in the best interest of your child, even though you don't think so.
it seems the road you've been on towards diagnosis has been quite rough. my son, who is high-functioning, went through a myriad of tests by numerous professionals. some said that he is too high socially to be Aspie( i think th equote was " People with Aspergers don't want to have friends"), others said that he appeared to have ODD, others said that perhaps we should be looking at personality disorders.............it was all quite frustrating. fortunately, because of my connections through the school i teach at ( a special ed non-inclusive, therapeutic setting), i was able to secure a thorough neuropsych by a very well-respected dr. he was the one to finally reveal that son, indeed , is aspie. in the end, it comes down to who do you want to believe ? if you want to believe that son is not aspie, then go with the diagnoses' you've gotten.......but if you truly believe he is aspie, then you must do whatever you can to get him diagnosed as such. no offense, but what is so wrong with being diagnosed aspie ?
when you close your eyes and think of your child, what comes to your mind ?

JanBiv

I agree with you that once teachers, drs, school staff know about the dx they attribute symptoms your child may not have. My 10yo son is getting group therapy for AS with other AS kids at one of the nation's leading Children's hospitals. And even they made notes in their evaluations of him that he hummed to himself - something that he has NEVER once done. I am not even sure the boy knows what humming is or how to do it. I have asked several people who have either known my son since he was little or have a lot of contact with him and none have ever seen him do this. It kind of irked me - my son definitely has many quirks, but please don't add ones to the list that don't even exist!

Like I said, I think you are right - they do attribute things that may be totally off base, simply b/c of the dx.

No offense taken. Now, what is wrong with being diagnosed aspie?

Well, I think it would be wrong to diagnose someone with Aspergers if they are not Aspergers, but that is pretty obvious.

What is wrong with an Aspie being diagnosed Aspergers? Let me clarify that I see absolutely NOTHING wrong with someone being Aspegers. If I had 5 professionals tell me today that my son is without question aspie I would not be devestated by this in any way. After all, he would STILL be the same child he was before I was given this news. In fact, I find his differences to be very special, and like I said in my other post, he is a GREAT kid and we love him just the way he is.

What concerns me more is other's perception of him when they believe him to be Aspergers. I have found that most of those is education who believe him to be Aspergers do not look at him like he is a GREAT kid, but a kid with problems whose "different" behaviors are things to be squashed! I have the perfect example which happened today, and I can tell you I am VERY discouraged because of this.

His teacher, who is not special ed but is getting her masters in special ed, told me today that she makes special accomodations for my son and that he needs to be treated differently than the other kids. I am livid.

He picks up on this very easily. If my son is Aspie, he is not classic Aspie. He doesn't have meltdowns and such, so i can't for the life of me figure out what kind of "special accomodations" she is making for him in PRESCHOOL! And he is EXTREMELY bright!! If she is treating him in any way differerent from the other kids, you can be CERTAIN he KNOWS it. She told me he has been giving her a hard time this week. Knowing my son as well as I do, he probably no longer trusts her. If she is not treating him like the rest of the kids, and not accepting of his slight differences, he is NOT going to respond well to her at all.

THIS is the exact reason why I don't want him dx'd Aspie. Note that this is NOT the same as my not wanting him to be Aspie.l He is who he is, and I love him just the way he is. Now if only the rest of the world could love him just the way he is.....

it's very frustrating to see others treat our children as if there is something wrong with them.maybe by delving further into what exactly the teacher is doing to treat him differently you will be able to respond accordingly. sometimes aspie kids do need to be treated differently ( my son needs most things to be stated concretely ~ no metaphors)...tone of voice can also be a problem for him. the only way we can change other's minds about our kids is by advocating for them and educating the educators along the way. as aspergers is a fairly new diagnosis to many teachers, they quite frankly don't know what to expect. sure, it's frustrating when they totally don't get your kid........some people will never get your child. you have to make the decison as to how far you are willing to go to get them to understand~ and by this, i mean, how many times can you bang your head on the wall before you realize that some people just don't listen ?
i understand what you're saying about the diagnosis, but you may never have that many professionals agree on a diagnosis.........like i've said before, my son has been "diagnosed" by 7 professionals. the only thing they could agree on was that my son was "an enigma" who was depressed.

keep plugging away, and don't forget to take time for you.