I know there are quite a few parents here with kids with moderate or even severe form of anxiety. How did this show when they were 2-3 years old? Did things get better or did you end up medicating?

I am starting to see a lot of difference in how DS3 acts at home and outside. He is really starting to come out of his shell at home, starting to communicate more and more every day with ease but ask him to do something new or unexepected, especially outside of his familiar surrounding and that's when he gets in that autistic shut down / not cooperate / cry / freak out mode (for which he has been diagnosed with high functioning autism). He's a very sweet child at home who wants to spend time with me and his dad, tries to engage us in whatever he's doing, even the last week or so started basically provoking me with making faces at me to see if I'll copy him . Still very reserved, you can just see in his eyes how he's thinking everything through really deep, but he is pretty much 100% here with us with perfect eye contact. He is ok when we go visit friends, you can see he's careful about everything but paying full attention to what is going on and only shuts down when he seems to be threatened.
We just ended with early intervention therapy 4 weeks ago and took a 3 week break before his therapy through school district and private ST started and he was the happiest child ever. He likes the new private speech therapist and is fairly comfortable around her as long as she doesn't push too hard and she doesn't. Yesterday was our second day there and when we walked in, first thing he said was "I can't wait!" ... all happy and smiling . On Tuesday he had the first school speech and OT session and he just froze there. The second they wanted him to do something he just shut down and started screaming, crying, running away. 30 minutes later they finally let him just run around and explore (something new he's started doing couple weeks back. Until this point he tried to ignore new surroundings but now he's like a little 1.5 year old that wants to see everything and try everything). But the whole stress of this resulted in him not even wanting to go anywhere outside the home. Getting him into his carseat has been a serious fight since then (and he loves car rides otherwise)

now, back to my original question ... I really wonder if a lot of this could be caused by some sort of anxiety? Thinking back, I had real issues with it when I was little and still do to this point but have learned to live with it. I remember it like it was today when I was even still in preschool and remember the feeling of hearing my heartbeat and feeling like my heart will jump out. I was frozen with fear but never told any adults around me or did try but they just didn't understand me. I was clearly identified as gifted (135-145 depending on the tests) but still always feared not being good enough. And I too use a "shut down / ignore" mode to cope ... to this day.

I hate the thought of possibly medicating my little boy but I also don't want him to fight the battles I had to on a daily basis. Did you see anything similar in your kids? How did you work through this? Did you medicate? Did it help?

btw .... he is NOT a sheltered kid. We do not keep him just at home, he gets plenty of outside exposure and in general is just fine with it and enjoys it. It is more of a "performance anxiety" than fear of the surroundings if it makes sense?

We do want to get his IQ tested eventually but first need to work on the communication issues and overall just want to wait till he's older (around 5-6 years old ... he just turned 3) but given the things he has been doing and looking back at myself, I'd think his score would definitely be higher than mine .... 145+ if I was to take a guess.

I had a child psychologist telling me that I strongly needed to consider medication for my 5 year-old child's anxiety because he was "just wired differently, so the only way he wouldn't feel intense anxiety was through medication."

I knew he was having problems with gravitational insecurity, and had heard that there is a huge overlap between sensory processing issues and anxiety. I told her that given his known sensory issues and the overlap of sensory and anxiety issues that I wouldn't consider medication without first trying OT directed at sensory processing issues. We didn't even get to that point. Less than a month of gymnastics and swimming classes, which are GREAT for sensory kids, and the anxiety disappeared. In short, addressing sensory issues dissipated an anxiety level that had a professional crying "medication! There simply is no alternative!"

I would encourage you to consider an OT evaluation to see if your child might actually have sensory issues that are creating anxiety.

HTH

he has been in OT for sensory issues for about a year now but we're not really seeing improvements . Well, other than seeing how much he enjoys and needs deep pressure and how it does relax him for a few minutes. We are doing private speech therapy where we work on some new found tactile issues with his mouth affecting his eating and how he forms speech. But you are right. SPD is definitely playing a major role in all this just like it did with me.

Both my boys probably really are "wired differently" because my older one started being a lot less irritated and nervous when we stopped most of his therapy. But his issues were different. He was always a show off constantly in everyone's face. It's the quiet and calm situations that make him anxious. Compared to DS3 who has it all bottled up inside.

Things would be a lot easier if he didn't have such a good memory! One negative experience in any one place or with any one person makes him completely shut down in that place or for that person for months. (completely avoids one room at the therapy place where he was pushed beyond comfortable ... for both him and me ... almost a year ago; gets upset at a girl in a play gym we go to because last June she took a puzzle he was working on away from him; ... and things like that).

Mom2277 - reading about your experience just makes me wonder even more if we should even bother with the school therapy that's clearly geared towards the kids being compliant, able to sit in a chair or one designated spot for certain amount of time, etc. when that isn't even our concern at this point? He's still almost 2.5 years away from Kindergarten (if he's to go to K at all as we are considering homeschooling early years for both him and DS4.5) and perhaps we should shift more focus on physical activities? I am already "the parent" when it comes to dealing with the special ed director because I went against their advice of putting him into special ed preschool and went just with the outside therapy. But I really don't see the point in insisting the child does something that he doesn't need for another 2-3 years

OK, this may not be an issue at all, but fwiw - have you had his vision tested? Our dd who is now 11 had severe anxiety as a 3-4 year old when we took her to new places or to large rooms, or to noisy places, or to ... you get the point. We couldn't take her anywhere without extremely severe meltdowns, but she was a-ok happy at home with no obvious anxieties. We eventually consulted with a psychiatrist who attributed it to SPD who sent us on to OT for the SPD, dd went through listening therapy which seemed to help some, but she still was anxious starting school when she went to kindergarten, took most of the fall semester to adjust to being there, finally got the hang of it and seemed to be ok, then fell apart when she had to return after Christmas break. It wasn't until 2 years later, 2nd grade, when she was having a tough time learning to read and reading from the board that a neuropsychologist figured out the not-so-obvious for us - she couldn't see clearly!

Anyway, that doesn't mean your ds is having vision issues - but that there may be something physical going on that your ds has been able to become comfortable with at home and can compensate for but when he's in new situations, or places outside your home, he hasn't had time to be able to get comfy with them and figure out how to cope. Vision might be worth checking. A regular eye exam didn't catch our dd's challenge - she had 20/20 vision in each eye (individually) but her eyes didn't track together at all and most of the time she was either seeing double or one eye was completely shutting off to avoid double vision, which then meant she had no depth perception.

Best wishes,

polarbear

ps - one of the things our dd did as a toddler and preschooler was to avoid eye contact when people were speaking to her. She eventually would look directly at us (her parents) once we started teaching her explicitly to look at us. We had some concerns for awhile that some of her behaviors might be autistic, and she also appeared to be ADHD (with the H for hyperactive emphasized).... but the lack of eye contact and a lot of her fidgeting etc were actually due to the vision issues.

polarbear - I would not be surprised if vision was an issue. He has never had a formal check up. Just a picture of his eyes taken during special ed evaluation. I have to find a pediatric eye doctor that would be good with him (or any kids) because the eye doctor's office I took my older one to was horrible. I mean, good care, but for adults and people with plenty of patience. Not for kids. I do think he can see well when it comes to reading and everything right in his face but not so sure about how his vision is affected by everything further away. Even might be the reason why he's only climbing down the stairs and takes him a lot of planning. He can climb up on chairs, tables, anything else vertical but seeing the space in front of him and planning his way down the stairs or down from a slide is definitely an ordeal. Yet he can walk up the stairs better than DS4.5. He also a lot of times pushes on his eyes with his fingers. It is something I mentioned to the early intervention therapists but they just said it's because he was tired.

How did they detect the actual issue that your daughter was having? By dilating her eyes? Or some special test? Or does the child actually need to be old enough to cooperate and say what he can or cannot see?

Mk13,
I wish I could be more helpful. I'll share my thoughts and reactions in the hopes that they might assist or spark an idea or help clarify your thoughts/direction desired.

First, I'll affirm your sense that school-provided OT might not be optimal. I think school-based rehab provides (OT, ST, etc.) have a very strong incentive to minimize needs and to focus on skills that suit their belief of what is optimal for class success. I'm dumbfounded that we had evaluations at two separate school districts, and in both instances, the school-based therapist reached a vastly different conclusion than private providers. Of course, private providers, too, might have an incentive to say a child needs their services. For instance, the school-ST said my son was only having problems with one sound, so he didn't qualify for school-based speech. I was puzzled because I identified two sounds. A private ST confirmed that he indeed had difficulties with two sounds. I had a similar experience at another school district. They said no delay or issue whereas an OT affiliated with a teaching hospital saw significant OT needs. I think you are more likely to encounter the provider at school pronouncing your child no longer in need of their assistance when that may be in the school's best interest, but not your child's.

Also, I share your concern that school OT, in particular, is tailored closely to compliant classroom behavior, disregarding broader issues. If you can swing it, I would see a private provider.

I'm sorry you haven't had more success in sensory treatment, despite sensory issues being present. I don't know whether it's applicable or not, but our success with sensory treatment required lots of ME doing things, not relying on OT to resolve/aid the issue. As I mentioned earlier, getting my children into gymnastics and swim was a quick and dirty way to resolve a lot of sensory issues in a way that let them be with other kids.

I'll also add that I've experienced "sensory savvy" as something like a fad. My impression seeing different OTs in EI was that lots of OTs spoke of sensory issues, but not all really, really had the training and sophistication to effectively work with it. The difference I saw in the OTs at a major pediatric teaching hospital addressing my children's sensory issues was a landslide away from how some of the other EI OTs approached and treated my children. I obviously have no idea how skilled your OT is, but you may want to consider a different provider if you don't feel like your making progress that may be possible.

I hope this helps!

I'm here to update my post. It's been 4 weeks since I originally posted my questions and concerns about anxiety and at this point I am more than convinced that anxiety must be playing a huge role in all of DS3.2 struggles!

This week was the second week when the therapists took DS into their rooms alone without me. Until that point I was always there to at least make him feel somewhat comfortable. 5 weeks into school therapy and he's at a point where he's screaming and nervous just driving by the school, he's back to chewing on his security blanket, he's back to chewing on his clothes, he's back to hitting kids around him (we had an issue with this last year for couple months that we got under control in October and had no problems at all, he was perfectly calm around other kids since than, just not joining their play and now after a little incident during his therapy session last week he's aggressive towards any kid around him), he's even kicking and hitting adults when he feels threatened and to top it off, Tuesday this week when we got home from therapy he was so nervous he kept scratching one of his thumbs so hard he now has a huge bloody scab there not to mention how angry and unhappy he was that whole afternoon. Basically, a month ago I went in with a very happy boy and now I have a boy who's always on the edge and hardly ever happy . We are also doing private speech therapy 30 minutes a week and he is fine there. When the therapist took him into her little room he did start kicking towards her and swinging his little fists but she got the point right away (I told her he had school therapy the day before), we took him into their gym and just let him run and he relaxed and just became a much happier child. This therapist clearly gets him. I didn't have to tell her anything and she could see right away (even during past sessions) what would push him over the edge and what would make him feel better. Yay for a non-pushy therapist!

But OMG! What do I do with the school therapy? We have 3 weeks (that means 6 sessions) left and I feel like every extra week of therapy there doubles the stress that DS is going through! My gut is telling me to just put his IEP on hold and pull him out NOW. Not even wait for the school year to be over! We want our happy boy back!

We'll keep going to the private speech during the summer since he is handling that one so well and may look into private OT in the same place. But when it comes to school I really feel like it's causing more damage than anything else . Would you keep pushing through the school therapy if you knew how miserable your child was? Or would you pull out knowing he doesn't even really need to be there given he's still more than 2 years away from entering Kindergarten (if we'll even do Kindergarten with him).

My first instinct would absolutely be to pull him out. But interested to see responses from more parents who have dealt with similar issues.

I know, right? I've been trying to fight my first instinct for the last 3 weeks The therapists are using the usual "if we push hard enough, eventually he'll come around" approach but I just don't see it working in this case. It has never worked for him and I just don't see the point when it's all just making him feel worse?

I think you know him better than the therapists.

I think people on this forum should be aware that highly intelligent children are in danger of being diagnosed with conditions they don't actually have, which can lead to seriously damaging "therapy" and "services".

Our approach has been to avoid any situation that could lead to "diagnosis" in the first place. And steer clear of places like preschools where some people are itching to attach labels to atypical children.

Problem is, with public school therapy I don't have much say in what's going on there. Their big thing from day one was to get him to sit at their little table next to two other little kids he has a 30 minute joint therapy with (speech & OT). There is no way he would sit in a chair so I just bring him in a stroller because he's more comfortable in the stroller. I told them to NOT put him too close to the kids. It will make him very uncomfortable and he will probably snap. Last week, the first time when he was there without me they came back and the therapist said ... oh, we had a little incident where DS hit the boy next to him, the boy hit him back and they just started swinging at each other. So I said I told you not to put him too close and their response was oh, we put him further away but he still managed to reach the other boy. Clearly, giving him 5" or 10" more than usual is NOT going to do it! You want him to cooperate, just let him sit alone! It's not that he doesn't want to be with other kids at all but he prefers to sit or stand alone and just observe other kids and eventually he moves closer to them and plays nearby. I told them upfront to NOT do any repetition with him. It drives him crazy! He remembers what they want, he just doesn't show it and ignores them. It has nothing to do with needing repeated tasks . It's that kind of thing that drives him crazy. Because of his autism diagnosis they are pushing him to use pictures. He completely loses it over things like that. He is using language at home quite well to communicate. He is now speaking in full sentences at home as long as he's comfortable. I honestly think when he sees those pictures he takes it as an insult! lol

Their main goal is to get him to "comply" and be able to sit at a table and do the school tasks. I get that. BUT he just turned 3! Clearly our goals differ because our main goal for him is to be happy and relaxed enough to function and communicate. We know he can do it. We see it at home and in other places where he's comfortable.

I agree . I don't want to just ignore the diagnosis just in case it really is autism but if the traditional therapy approach clearly isn't working than that should be a serious red flag for the "professionals", right? The school wanted him in special ed preschool but both my husband and I were absolutely against it. If two sessions a week can cause this much of a disaster, I don't even want to imagine what would happen if he went to preschool 5 days a week! I told the school all this before hand but you know how it is ... I'm just being "that" parent

We have run across lots of teachers and other adults in the "cry it out camp" who believe kids will just "get over it" if parents butt out and let the professionals handle it. This was a bigger problem at younger ages but I have always felt/known this approach to be wrong for my child.

My son is like yours in that if someone tried to force him to do something he would no longer trust that person. He would remember it for months and there would be no going back. From a very early age this was true. Other adults who "knew better" would not believe me despite my instructions and would invariably ruin the opportunity for me to healthfully involve my child in that situation.

I agree whole-heartedly that you need to trust your instincts. This is a bad fit for your child and the therapists are not listening to and respecting you. I don't trust any "professionals" who do not respect a child's parents as fundamental partners in the success of therapy and true experts in who that child is and what he needs.I hope you can make a change that gets more effective results for your goals.

YES! The remembering the negatives for months is what they don't seem to get! The previous speech therapist (through Early Intervention) made that mistake (against my advice of not pushing so hard) and during that session, 3 months before aging out of EI DS completely shut down for her since then would yell at her at the door "Go away! Bye bye!" for weeks! Eventually he would let her in without sending her away so quick but would instead go into a full ignore mood. No matter what she did he would not respond to her. She was only allowed to tickle him and then he'd go back to ignoring her. And she still didn't understand! She asked "what's going on with him?" and I explained to her that he didn't like to be pushed and she said something about that happening weeks ago. And when I replied that yes but he REMEMBERS it she couldn't believe it would have that much effect on him.

He is a classic example of kids who need the Floortime approach. Joining them in what they enjoy not pushing them into other activities. How is it that I have heard and read about Floortime and the therapists haven't? Or perhaps they have and choose not to believe in that therapy style? It's clearly what he needs. That's what I do with him and he's more compliant than DS4.9 who has the need to fight me on everything.

What you just described is about half of the Floortime approach. The other half is really about gradually expanding their boundaries after you've got them engaged. If you just respect their limits, the limits stay narrow. But if you join the child where they are and then stretch their limits, you get growth.

Autism tends to narrow a person's interests and capabilities; IMO the best parenting and/or therapy really does challenge the excessively narrow limits and encourage the child to understand that there's a wider set of possibilities that are safe and okay. That flexibility makes a better life.

DeeDee

Oh, I agree. And I do stretch his limits but in a way that's more comfortable for him. Not by repeated pushing over the limits, which our experience from the past 11 months clearly shows doesn't work for him. Whatever approach is used, it should improve things ... not make everything worse. What good is any therapy when DS and everyone around him ends up being miserable? Two months ago we had a boy that we could take anywhere, he'd enjoy being outside and around other kids (not play with them but still enjoyed their company) and now just getting him into the car is a fight, he'll punch any kid near him, he'll scream and shut down when something bothers him rather than just calmly walk away like he used to. So it's not that we wouldn't expand his limits. We certainly do but in a way that works well for him.

Oh, MK, I feel for you. Sadly I don't have any advice, but I just wanted to offer encouragement. I think your approach of gently meeting your DS at his level is the best way to overcome these challenges. It can be so stressful for sensitive children to be pushed by misguided strangers. Poor little guy!

MoN ... that sounds so much like our case! We go to children's museum, we have play dates, we go to birthday parties, we do all the usual things. DS even enjoys all this as long as he can go to a safe place when he needs to (going to play away from others when they get too loud, climbs into his stroller to play video games and whatever else makes him feel safe and calm). The only place we really have to avoid are public restrooms! lol

We tried private group therapy last fall and that was a fail. He could not stand being so close to the other kids and then one session when the therapists just pushed him too hard and let him cry his little heart out he was done with them and nobody could ever get him back there. We just stopped going at that point as it wasn't helping him and it was making it hard for the other kids to get anything done. Now, 6 months later, he still shivers just walking by that room (it's in the same place where he goes for private speech.)

I really feel like the school therapy is doing a lot more damage than good at this point.

Sometimes I wonder how much of his shyness and anxiety is the result of growing up with his obnoxiously loud and always extremely intense brother? (DS4.9) The little guy loves it when his brother is at school and he gets his 3 hours of quiet.

MK13 have a listen to this, particularly the last 15-20 mins.

http://www.blogtalkradio.com/autism...er--autism-token-theory-autistic-burnout

Personally it does not sound to me like your son is misdiagnosed. It does sound like the therapy he's receiving at school is far from theraputic. I agree with DeeDee you still need to build flexibility and expand skills, but you seem to be building shut down at the moment. We pulled our DD out of the social skills class that was run by THE autism body in our state and supposedly dedicated entirely to girls like her. It was wildly inappropriate, she was clearly and concisely able to describe how condescending it was and ask us "What on earth do you think is WRONG with me that you are sending me there?". She still needs social skills work, but we pulled her out of that immediately and will find something eventually - something that builds smiles AND self esteem, rather than telling her she is stupid and clueless, which was the message she was getting loud and clear from this course.

thank you for the link! I started listening about 20 minutes from the end, right where she talked about how the kids can seem normal when they are relaxed and happy ... just like our case. DS had a break in therapy for about 4 weeks when he aged out of EI and before school therapy started and he was the happiest kid on Earth! And then it quickly disappeared as soon as the therapy at school started. And I was actually able to get the school to agree to 2 sessions that are co-therapies rather than 4 separate sessions they had planned originally. We would ALL go crazy having to make him go there 4 times a week! I feel like we are all feeling burnt out. Not just our son. And the fact that he's not only striking at others (and he truly is the sweetest kid on this planet otherwise! Always cuddling with me, kissing me, needing contact with me or his dad and even with his brother when he's in his happy mode!) but now even unintentionally hurting himself, that's just wrong and I really do need to put a stop to it.

There is absolutely no way he could be in a group setting for now. It would turn into a much worse version of what we are going through right now. I don't believe he will be like this for ever. It just seems that structured world is too overwhelming for him for now and he needs more time to learn how to relax in it. He may be a very different child a year from now. It's probably hard to believe from how I've been describing him in my various posts but he has taken HUGE steps in the right direction in just the past 6 months. So we know he is working hard in his own way to be where he needs to be. He just needs to do it on his own terms.

He is very perfectionist in what he does and both therapy and school overall challenge that side of him too much. He has ways how hew wants to do everything and needs to take the exact steps he planned otherwise it isn't correct. Once he's a year or two older he will be a lot easier to reason with. There is not much good in pushing too hard now.

Ok. I DID IT! Pulled him out of school therapy starting this week. I kept thinking about what and when to write to the therapist and the special ed department when the speech therapist called me couple minutes ago asking about summer school and if we wanted either boys do therapy in the summer. So I told her about our issues and about thinking that pulling him out would be better for now. Now I just need to send her a note to make it official so she can put the IEP on hold for him and we'll talk again later in the summer before the school starts.

Our goal for the summer will be teaching him to relax!

Yet another little update, just proving that the school REALLY DOESN'T GET IT!

So I let the special ed lady know we are putting DS's IEP on hold and explained all the reasons why, the fact it stresses him out so bad and everything else and she emailed me back thanking me for letting her know and the next thing she says is something along the lines of "I hope he's coming to early childhood preschool in the fall. We are planning on having him in there" ... SERIOUSLY? With how hard just the twice weekly short therapy has been on him they expect him to feel fine in a 5 days a week preschool? Why exactly should I do this to him??? Not to mention, he absolutely despises any repetition and knowing this I should put him in a preschool where he'll spend all week watching others to learn one letter of the alphabet ... just to go through the same pain yet again the following year? We already know that the only time he comes out of his hiding is when he has something engaging and new to do / learn. Being forced to socialize while having nothing new to learn is really not that good of an idea.

Not to mention, I spent the whole day (well, the whole 3 hours) with the class earlier this week and used it to watch how the kids behave, how they are disciplined just to get an idea of if I could see DS3.2 fit in there at all and once again, I know he would be miserable. He would spend most of the day in time outs, which in return would get him more angry and would land him in more time outs. I saw it happen with one of the boys there who is in many ways like DS3.2 just not as high energy so at least when they put him in time out he would stay in time out. That would not be the case with our son.

So I just have to figure out a diplomatic way of saying thank you but no thank you ... for now. We will definitely revisit the idea of small group therapy when we feel DS is ready for it but I doubt much will change in the 3 months we have till the next school year starts.

mk-

think about how/what you will say carefully, I know you will- but I mean- where we are, in order to receive district services ie speech ot etc, you must be in the districts programs- whether that is preschool for the 3/4 yo's or kinder for 5s and so on.

I know I have posted somewhere that no way was I putting my kiddo in the various preschool classes available to him thru our district, BUT I wanted the services- speech therapy to be exact! and so I HAD TO place him at age 3....
I was less than thrilled with that initial preschool...

sooooo Call it Fate or God or plain ole fashioned Luck? but early on there was an issue with the teacher and my child, and I pulled him- refused to allow him to step foot in her presence ever again- (later on the police would stop by investigating that particular teacher, and what transpired with my son)
ok, so- long story short- he continued to receive his services!!!

the next year, turning 4years, I just don't enroll him but continue services! after some time they realized he wasn't in "school", we had an IEP, I am told he must do preschool for services- I ask for several to choose from- none were a fit for my child, and I refused them and it helped the teacher also thought my child didn't belong- and we kept services

hahaaha later on, that spring? they did MAKE me take him to a biweekly 1.5hr class for kids 4-6yrs, Latino's with little English!! (for the record, we are white and speak only English) but I chose to embrace it it was another awesome social experience for my DS and I was right there with him the whole time! he also was able to become a sort of obvious "leader" because he already knew English LOL and so the kids gravitated to him, which really empowered him and gave his social skills and self esteem a healthy boost- not to mention they were all great kids, who cares about language when you get kids together? they figure out how to play

moving on, age 4 turning 5, I refused to allow him to start kindergarten, and so we lucked into a transitional kindergarten program, all kids were 4yrs turning 5 that fall/winter--- another perfect social learning environment for my child to grow in, while learning about how a school day functions/routines etc

MK- I really think these are the types of things your kiddo's need! I think whatever you choose will ultimately work out for you guys you remind me a bit of me. just try to give them appropriate social opportunities, and stay positive and focused on your goals--- don't refuse the offer of preschool so much as get them to see that it isn't best fit and they somehow think it is their idea vs your idea

sorry my reply so long.
once again, I blame the coffee I drank too late in the day!!
take care!!

cc6 - thank you for your thoughts and experience! You've been through a lot too!

I didn't completely refuse service, I just put the IEP on hold, which means it's still valid for the whole 1 year since we initially had the IEP meeting and signed the plan. So we have till March of next year to figure out what to do next. No matter what, I am planning to always have one foot in the school just for the IEP itself. We'll see what we can accomplish during the summer and my hopes are we can do at least a short speech / OT session weekly through school in the fall but this time I hope the therapists will listen to me more closely when I tell them that certain situations will backfire on them so we don't end up in the same spot as we just did. But I know for sure he will not be ready for their preschool.

Fortunately this time around I know how the system works as I had been through something similar with DS4.9. He had different kind of issues and seeing him we thought he clearly NEEDED the preschool when he aged out of EI but because he was always a big show off during evaluations and loved adult interaction, the evaluation team didn't see the need for more than 60 minutes of speech per week. They did not see the OT issues and his social problems. Between 3-4 years old he loved being with people but when it came down to actually being with more than 3 or 4 people near him, he would go hide in the corner. Could not stand being touched pretty much by anyone and would freak out. Always on a sensory overload. So, we refused the speech back then because in our mind that was not what he needed and he too did not like therapy sessions at all, just like DS3.2 and we waited till 10 months later, did the speech for couple weeks and since another few weeks later we finally had DS's PDD-NOS diagnosis and with the recommendations from the school speech therapist he was finally offered the preschool. But the big difference between the two boys was that the older one really WANTED to go to preschool and we needed public preschool because of his allergies and because of potty training issues. Otherwise we'd had just said "forget it". Now, 6 months since he started the special ed preschool and he pretty much runs the class and is a social butterfly . His only problem is, when he talks to the other kids, nobody gets what he's talking about. They just give him a blank stare and he goes his way .

So, with that experience, we have seen a lot can change in a child in a matter of few months and with DS3.2 it's obvious he needs more time to get comfortable with outside world. We are almost certain he will be homeschooled but even then he will be eligible for speech services through the school at the minimum so I do plan on keeping his IEP alive in some shape and form.

One thing I don't get though. He is obviously having problems with kids being too close to him. So why, knowing this, would the therapists put him right next to the other kids, making him so uncomfortable to the point where he now can't stand being around anyone? I get that they are working through his issues and trying to get him be more comfortable but isn't one of the points of IEPs to give kids accommodations so they can function in their learning environment, which in his case at least for the moment would be letting him sit away from others so he wouldn't freeze and snap? Or does this only come into play later on when kids actually attend school full time?

As a side note, DS3.2 is doing quite well this week. Still very much on the edge but for the most part very happy, playful, we have even seen some nice imaginative play and to top it off, yesterday he decided he'll tackle his fine motor problems and got me to teach him to write letters! He wanted me to guide his hand the whole time but it was a huge success because usually he doesn't like anyone teaching him anything. And in this case we spent 30 minutes tracing dry-erase letters and he still wanted more . So, he's clearly doing quite well, just on his own terms.

Mana, thank you so much for bringing this up! I have never heard of it but just reading in the link you provided that would make so much sense! The link mentions ASD needs to be ruled out first and the main distinction being that person with SCD does not have the repetitive / restrictive behaviors of an ASD person. THAT is exactly the point I have been trying to make to anyone who would listen to me (of those dealing with my son). He never had nor does he have now any of that. There are objects he likes (like his blankie) but that's a normal toddler / preschool behavior and other than that, we have never had to deal with any of this (unlike DS4.9 who's curtains had to be closed a certain way, lights had to be certain way, he had to be the first one down the stairs, shirt comes on first, then pants then socks, etc.) DS3.2 just kinda goes with the flow. He is our EASY child until he's put into an uncomfortable social / communication situation when he shuts down.

So this is definitely something I need to ask about at his next evaluation, whenever that will be!

That can itself be "restrictive"-- not being able to engage in certain situations.

I would also point out that the "safe minds" website is largely pseudoscience-- it's one of those groups that still says mercury in vaccines causes autism (which has been definitively ruled out) and advocates for treatments that have no documented validity. I wouldn't trust much you read there.

DeeDee

I haven't really paid much attention to the website itself, just the information, which goes along with info here as well http://www.google.com/url?sa=t&rct=...qLFZT8jLymoFhSqHdg&bvm=bv.46751780,d.eWU http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&ved=0CDsQFjAB&url=http%3A%2F%2Fwww.psych.org%2FFile%2520Library%2FPractice%2FDSM%2FDSM-5%2FDSM-5-Social-Communication-Fact-Sheet.pdf&ei=O6iXUYatDozW9ATyvoDgDA&usg=AFQjCNFtxzJ1AVrl7bVeEPr0KhBfnVdegw&sig2=LF_6qLFZT8jLymoFhSqHdg&bvm=bv.46751780,d.eWU (sorry for the long link ... first time trying to post a link on this forum)

We have had a lot of people in various situations tell us that he doesn't really seem autistic to them (people who work with autistic kids) and that he has more going on than just high functioning autism. Not to mention that when we bring him to school he's basically not functioning at all.

mana~
I appreciate your link as well
I have heard "safeminds" site is controversial etc, but I have a very open mind and like to see all sides- parents living it, scientist/medical studying it/trials etc, and yes even the "pseudoscience" as deedee called it

what's that saying? behind every rumor is a half truth? do I have that right? ok, not same thing here, but still....

anyways, I like to hear about all sides, especially regarding autism!

mk13, my DS under new dsm-v would not qualify for any dx. not autism (current dx) and not even the SCD- though his biggest deficit has always been pragmatics! truth is he may have been misdiagnosed!

no one has ever thought DS was autistic either, but many have suggested he was very bright & creative!

I have since met other boys whose parents in describing their son as infant/toddler, described my own! the kids were all tested/labeled MG/PG!! ok, let me clarify I have met 3 boys. not a huge # I know.

Thank you, Mana! My guess is DS4.9 might lose his PDD-NOS diagnosis with the new criteria but DS3.2 will definitely have a diagnosis of some sort. I just don't believe the current High functioning autism is the correct one.