Autism Spectrum Disorders

My Son is 4 yrs old.  Just before he turned 4 he had an Early Childhood screening for Preschool & Kindergarten readiness.  He was doing well, but got to a point where he got frustrated & threw a tantrum & quit.  Needless to say, he failed the test & we had to have him retested.  I was confused as to why he got frustrated.  I think he did not like the person giving the test.  & once we got home he did all the things he refused to do for her!  We went back for the retest, only I didn't know that they were "looking" for something specific in him.  Autism.  I have never given that diagnosis any thought because my child doesn't have those traits that I've read about.  At the end of the testing they told us that they believed he had Autism Spectrum Disorder.  I think they found what they wanted to find & used some of the innocent "signs" to make him fit the diagnosis.  We decided we would forgo any further testing thru the School Dist & sought out medical professionals.  We did not agree with this diagnosis.  Our Son is affectionate, speaks very well, likes to play w/friends although since taking him out of daycare at age 3 he's had limited contact w/other kids.  We thought at worst he could be delayed a little socially & that we probably didn't provide him the structure he needed.  We went to a place that could test him & they told us they "didn't really see anything".  So we decided not to get him tested.  The so called "signs" the School Dist found seem to have either gone away or diminished greatly.  For awhile he did have intermittent eye contact.  Which seems to have completely resolved.  He has the occasional tantrum.  Which is usually short lived.  He does get frustrated when something he pervceives is difficult.  But we figured that we just have to teach him how to deal w/frustration.  The one thing that is prevalent in him still is the hand flapping that he does.  He's done this forever it seems but he will only do it when he's excited or trying to tell us something important....It's usually followed by him lifting his legs up & down.  This is my question.  Does hand flapping w/excitement have to be an Autistic trait?  Can it be outgrown?  I've tried to redirect him when he does it.  He just tells me he's so excited!  I feel guilty like I'm trying to change who he is & I don't want him to think that there's anything WRONG w/him.  The only reason I do it is because I know it's a little quirky & don't want him to be ridiculed as he gets older.  

[RockRose]

Hmmm.  Have you read through the symptoms of Autism Spectrum Disorder?  Here's a link that seems pretty clear.  I'm really dismayed that it's considered a "disorder" rather than a "characteristic".    Mild autism,  and high intelligence  can actually be a gift - where would the NASA space program be without scientists who are brushed with Autism?  Nowhere,  that's where.    It takes all kinds to make the world work,  and labeling a child with specific talents (I believe children overly focused on structure,  physics,  math or science have specific talents,  not disabilities!) disabled doesn't seem to be looking at the broader picture.

If your son is successful in finding a few friends,  gets along well enough to succeed in the classroom,  and is fairly happy - I wouldn't worry right now about this diagnosis.  

http://www.thegraycenter.org/identifyingachild.cfm

[JonJonsMom]

Thank you all so much for the comments.  My Son met ALL of his milestones on time.  Some like the gross motor skills were right at the end of the "average"..He's always been a happy baby, toddler, little boy.  He listens, communicates & talks very well.  He has lined up some of his toys, like cars.  But he also plays with them...I have absolutely no reason to think he has Autism except for that hand flapping.  & because the school dist mentioned it.  I think he gave up because he didn't like he woman giving the screening & he was frustrated.  Maybe I'm kidding myelf that alot of kids do that?  In my heart I just firmly believe he doesn't have any form of Autism.  It seems like it's such a heartbreaking disorder depending on the level of severity the child has & it just breaks my heart that the children & families have to deal w/it.  When the school dist mentioned him having Autism & offering Special ED we asked what the chances were that he'd be in a normal classroom environment at some point.  They're answer "it can happen".  We were absolutely floored & from then on were pretty much adament & defensive that that would not happen to him.  Again, I just do not feel that he has Autism.  & it makes me angry that if kids display ANYTHING out of the so called Norm or don't fit that mold then they are labeld.  I would agree that it's more of a charastic than a disorder..I've read that there is such a dramatic increase in the number of kids w/this diagnosis.  Either we should be terrified that something is very wrong & inflicting our children w/this "disorder" or we should be considering that they are WAY OFF in their diagnosing of it.   Now a days it's the popular diagnosis.  10 yrs ago it was ADD & ADHD.  Everyone seemed to have it.  

[RockRose]

JonJonsMom - I'm wondering why you had him tested in the first place - is he in a pre-k program and they suggested he be tested?  Was this something that all children entering the district undergo?  

Here's my experience with school districts.  If the child is compliant,  and not a distraction in the classroom,  school districts often downplay a child's learning disability because once the child is diagnosed,  the school district is on the "hook" to provide a lot of expensive services.  So it is in their interest to keep well-behaved children out of the special education services they actually could use and succeed.

If a child is a distraction in the classroom to the point that teachers can't teach effectively,  or it takes a great deal of the teacher's physical and emotional energy to control that one child,  the school district will find all kinds of reasons to get that child out of the mainstream classroom,  even though intellectually that child can do all the work.

Is that what's happened here?  Was he already enrolled in a pre-k and the teacher was unable to get cooperation from him,  and they went looking for a label so he could be removed from the mainstream?

Best wishes.

[JonJonsMom]

Actually no that's not what happened at all...In our State (MN) they do early childhood screening for kids ages 3-4..prior to entering Kindergarten.  We took him to get his screening done & this is how this all came about.  I almost think in my State that they WANT to have those special needs kids so they get the $$ for those programs.  Because they seemed so willing to put him in special ed.  They told me that at the moment he didn't qualify but if they were to test him in 1 month when he turned 4 then he would qualify & they wanted him to come to their preschool program.  

He's in a preschool program now within a very large church & is doing very well.  The only thing I've heard is that he needs to work on his listening skills.  What 4 yr old doesn't?  I ask him every day he has school "how was school today" & he'll tell me it was good, he played w/so & so..they're his friends..or "I got a time out today"...So there was no reason to get him tested other than that's what they do here...there's never been a suggestion of any problem either by anyone who knows him, friends, family members, or his previous daycares.  

I guess I just feel like they wanted to put him in special ed.  When I felt anything they thought they saw could be explained or was being blown out of proportion.  If I thought he needed the extra help I'd have him signed up for special ed so quick & this wouldn't be an issue.  I guess it's just that the dist told me something I don't believe to be true & I don't want it to haunt him his entire academic career (which hasn't even started yet)!.  So we will pursue having him "offically" tested to rule it out or confirm it.  At least then if it should ever come up w/the dist again we can say we've had him tested.  Unfortunately there is a 6-8 month waiting list to get him tested & in the meantime I'm trying to find as much information as I can & see if anyone else has had this same kind of thing happen to them or their child...

[RockRose]

It sounds to me,  too,  that they wanted to put him in special ed.  When you were first describing the testing,  I thought it was to offer him special services,  or an IEP (individual education plan) or some other kind of support.  To test him at this age and suggest removing him from the mainstream and then stating "it could happen" when you ask could he eventually be returned to the classroom seems EXTREME,  I agree.

I also agree with you getting him completely evaluated by an independent OT not associated with the school,  and I wouldn't even say he's been diagnosed with ASD by the district.  Just maybe you're concerned about hand flapping and want to know exactly what his strengths and weaknesses are.

Best wishes.  Yikes,  this sounds so aggressive on the part of the district.

[JonJonsMom]

Thank You SO much.  I thought I was overlooking something that was right in front of me or I was just being a crazy defensive Mom.   It made me angry that they made me second guess my child.  My Husband & I both feel the same as you have both mentioned.  That it was extreme on their part to make such a diagnosis.  HOW are they qualified to do that?  They're teachers!  & then to pretty much dash any hope that our son would be in a "normal" learning enviroment?  I have to say, once we do get him tested if it comes out like we belive it will, I will certainly be writing a letter to the school district.  I think they were out of line to try to make that diagnosis.  How after 90 min they can make that kind of determination is beyond me.   The turmoil & angst we felt & what we've gone thru is hard to put into words.  I do believe I know my Son best.  You've said, a mom knows her child best. I agree.  Plus I'm my child's biggest advocate.  Thanks again for the words of support.

[mom2-2ts]

Hi there, I'm coming here in several different roles..1 as a mother with a 3 year old with an Autism spectrum disorder...2 as a behaviorist for my local district in Special Education... and 3 as a huge advocate for early testing.  It is my belief, that all pediatricians should, when they see a child from their 1 year check up on be giving a simple checklist test to the parents in order to see if there are any emerging ASD tendencies.  I am actually quite happy to hear that a school is taking this kind of interest.  
That said, I am also a mother who received this diagnosis 1 year and 4 months ago.  I didn't see anything really except for a speech delay in my daughter.  She was extremely affectionate, made eye contact with me, although not many other people, and did the cutest little things when she got excited, like hand flapping.  She did meet all of the normal milestones up until speech became a factor.  
I do not want to worry you.  I must say this, Today, after being in a special autism preschool since April of this year, and being mainstreamed part time into a regular ed preschool since August, the school and ourselves decided that she was ready to be fully mainstreamed in regular ed, SHE's ONLY 3 1/2!!!!!  we're thrilled to say the least.  But that's the great part, we got the diagnosis, it was devastating, however, we started doing our homework and got on interventions right away.  The sooner you can do this, the better your child will be.
I am definitely not saying that your child has an ASD, but from the sounds of it perhaps you should look at something called Asperger's Syndrome which is an ASD, but it is a child who has no seech problems.  It is important to follow through on this though.  Get him tested through a child psychologist, if it's nothing GREAT!, if it is, don't give up hope because there is so much out there.  I for one would love to give you some of the great advice that we were given that got us where we are today with our daughter.  Good luck, I wish you the best.

[sunnyola]

My son is 3. He is not an easy boy--very  active, not always doing what we say ,trying to be the Boss...... but he seems normal and he goes to Preschool with no problems.
He does like to line up his toys --bugs or cars,.....
I just red a lot here that lining up the toys.........may be a problem.
Should I be concerned if my son playing with his toys this  way?

[JonJonsMom]

We're on a 6-8 month waiting list to have him "officially" tested w/a center that deals w/behavioral disorders in children.  We decided that it would be best to have him tested.  We want to know & have something official in case it would come up at some point while he's in school...Although we are still adament that any assistance he could need would be thru this center rather than our school dist.  They just didn't give us a positive reponse about having him in mainstream classes.   I've watched him very closely over the past few months since the suggestion of Autism came up.  Of course as his mother I do not want to see any of those signs.  But I do admit there could be a couple.  But I know from talking w/this people at the center that they do not diagnose ASD lightly & he'd need to meet so many signs before they would give that diagnosis.  Which makes me feel much better.  On the other hand IF he should get that diagnosis I think he would have such a mild case that I don't feel he'd need any special anything.  He met every milestone & at every Dr. appt they did have a checklist which asked all kinds of questions about skills & behaviors.  & nothing ever stood out.  I've read up on Asperger's as well & he doesn't seem to fit that.  So I guess I am in a holding pattern for now until I know a definite diagnosis.  It's crazy too because if you look at the list of signs & traits of ASD, how many of us would have at least 1 of them?  Quite a few I'd guess.

To sunnyola - If you've looked at the list of signs & traits & all he does is line up his cars I wouldn't worry too much.  I think some kids just like to do that.  They like things a certain way.  Does he ever play w/them?  Or just line them up & leave them?  Does he play pretend?  My son lined up cars but they were in line for a car wash!  

[MomofJacob]

I'm a mom of a 3.5 yr old who is going to community education pre-school, has been told by a behavioral specialist (teacher) after a 20 minute observation that they believe my son is on the spectrum.  Your response to your child's experience is exactly what my and my husband's has been.  We've met with a PhD Psychologist who sees a couple of flags - some eye-contact and repeitive speech - but doesn't strongly suggest testing.  I'm interested in what your family's experience has been in these past years.  

[Sandman2]

   It would be wonderful, if you get a reply back.  But, typically with a post that old - it doesn't happen.
  I am curious - how long did the psychologist meet with your son?  The behavioral specialist (teacher) watched him interact with his peers for 20 min.  I am guessing that she did this because his own teacher after being with him for quite a period of time - requested the behavioral specialist (teacher) to watch him.  If you feel satisfied that the psychologist spent an equal amount of time - that's cool.  Although I wonder what you meant by, "doesn't strongly suggest testing."   Is that your interpretation of what he said?
    The whole point of this is that the sooner a child who presents problems gets help, the better the chances for a normal life.  I would err on the side of caution.  There is nothing the "help" would do that could hurt him.

[MomofJacob]

Thanks for your reply.  Probably won't hear from the mom that posted so many years ago - but wouldn't it be great to hear how the situation progressed?  The behavior specialist observed Jacob in February after I put in a request for it and felt that he was not receptive no initiative socially and was pre-occupied with just one activity of blocks.  His preschool teacher (30 year veteran) who has taught him this entire school year saw periodic repetitive language and some impulse control issues (revved up when another child initiates and usually towards the end of class).  I, being a tad hypervigilant, kept inquiring about things and she ultimately said that given my angst that an eval would be a good next step.  After she heard the behavior specialist say ASD she recoiled and said that she was concerned about such a designation and socially he does wonderfully.  The PhD at Children's Hospital Mpls saw Jacob on two occasions for 1 hour each time.  Her words were 'I will support your decision to test or not to test.  There are a couple of flags'.  My husband and I were looking for a yes or no.  There's a lack of trust with the school district because they've made what seems like a quick judgement that alters what I thought my child's world was going to be.  I'm worried that the threshold for qualifying for school services is so low that he will qualify simply by being tested.  And if taught in a modified way will it be the best way for him.  

[skepticalpeach]

Since ASD is diagnosed on a spectrum it is possible that your son could be autistic. Just because he has some good social skills doesn't mean he doesn't fall on the spectrum. My DD is autistic, but is incredibly affectionate and caring. She has no problem seeing something from someone else's perspective, which is often uncharacteristic of people with ASD.

We also saw a developmental ped at Children's Minneapolis who diagnosed my DD with autism based on the tests that her therapists have done. I went into the appointment and told him what I thought it was. It's actually really nice to have the diagnosis because it's easier to get services. Just remember that no one can make you agree to any plan of actions. The school district can propose an IEP plan, but you do not have to agree to it. So, in the end it is your decision. I don't know where you live in MN, but some counties are not very good with special needs children and others are. Generally, in MN the school districts are more likely to try including the child with special needs in a regular classroom rather than sending them to special ed. If you want more info on different cities feel free to send me a PM!

[specialmom]

Hi,  well, I think a mother's instincts really help here.  That your child functioned 'pretty' well in preschool is good to know and something to celebrate.  My son has sensory integration disorder ---  NOT autism and has the symptoms from time to time in preschool that you describe.  He's now 8 and with occupational therapy has been doing fantastic for years.  There are definate characteristics to autism and social and language are the two hallmark signs.  My son's sensory issues cause an issue with speech as well but his ability to communicate isn't affected.  A child with severe sensory issues would possibly have difficulty communicating.  But I think it is almost all kids on the spectrum of autism that are going to have something to do with speech.  Even verbal children that are high functioning are often characterized as speaking like 'little professors', staying on preferred topics, not really having two way conversations and preferring older kids or adults to age mates.  

We had our son evaluated by an occupational therapist for sensory on our own and have done private therapy.  Many insurances will pay for this.

Again, my son has the issues of eye contact and will occasionally repeat himself in an effort to get his thoughts together and he is not autistic.  His sensory issues instead play a role.  

But I can't tell you how much I agree with Sandman and Diva.  Our son was diagnosed officially at 4 and began OT then.   Early intervention can change the course of a child's life.  good luck

[Sandman2]

    " And if taught in a modified way will it be the best way for him."   If he  is in the ASD spectrum - I think that not being taught in a modified way would be the worst possible thing for him!   Furthermore, if diagnosed, he is young enough that he could soon be back into a regular schedule if he gets help now.  But you would definitely want to take a look at the different programs out there.  

[CheleRae]

Hello!  I am JonJonsmom.  It's been so many years since I posted this question.  Seems like forever ago.  My son is now 8 1/2.  We did pursue having him tested.  It was very interesting.  We learned he had above average intelligence and that he was a very outgoing kid!  He still didn't quite meet the criteria to be officially diagnosed with Autism.  

Kindergarden came and at that time we noticed more behavior issues than he had in Preschool.  But we kept telling ourselves it was just his strong personality.

1st grade we moved and switched school districts.  Jonathan continued to have tantrums.  Especially at school when things were difficult.  1st grade was a hard transition for him.  By the end of the school year we had him put on the lowest dose possible of Prozac.  It helped tremendously and the tantrums stopped. He struggled with sitting still, paying attention and daydreaming.  Good thing he was so smart because otherwise he'd have done very poorly by his lack of paying attention.   We decided to have him tested once again but this time for ADHD.  In the end he didn't officially have that either!  Turns out he has a little of this and a little of that.  Meaning..Austim..Aspbergers..ADD / ADHD.  He was officially diagnosed with Pervasive Developemental Disorder NOS.  Which to me, is a catch-all.  They can't really diagnose him with anything specific.  It was suggested that we COULD do medication if we wanted.

We waited an entire yr before we tried ADHD meds.  He was well into 2nd grade before we finally decided to give it a try.  After several trials we finally have a good combination of Prozac and Concerta and he's doing great!!  He's in 3rd grade now..He does well in school...He has friends..and most importantly..he's still MY Jonathan.  I was so fearful the medications would change his personality!

I would say to you..Trust your instincts..follow your gut and be your childs advocate.  IF you think there is any chance THEY could be right..get your child tested..If only to put your mind at ease or to start services and treatments that are there to help your child succeed.

We eventually did do special education.  Not until we changed school districts.  And what I had been so afraid of..him being ridiculed..didn't ever happen!  I'm not sure how much longer he will be in special ed.  I would assume another 1-2 yrs before he moves on to middle school.

He doesn't display much of the hand flapping anymore.  But it's still there occasionally.  I think back to when we first started this journey and how afraid I was for his future.  Not so much anymore.  I'm glad I took charge and followed thru with the various testing we had done, meds we tried and the therapy (speech - occupational) along with special education.  It was all to help him succeed and I'd say that he is succeeding.  Had we done nothing I would think that he probably wouldn't be doing as great as he is.  I hope this has helped you and if you want to talk further I'm here to listen!

[CheleRae]

Sorry I had more to say!  This sounds so very much like my son.  Jonathan never had the repetetive speech.  But impulse control seems to be an issue for him.  It's something we continuously work on with him.  I hope as he gets older he gets better at self control.  He does struggle some socially as most kids on the spectrum tend to.  He doesn't have any BEST buddies.  Which kinda breaks my heart.  BUT..that being said.  He's happy and he is a likeable kid, per his teachers :-)  

We met with Alexander Center but didn't test thru them.  We ended up testing thru Fraser and they were the ones to diagnose him with Pervasive Developmental Disorder-NOS.  I have to be honest.  I still left that appointment in tears...I just didn't want there to be anything wrong with him.  Although now that we've dealt with this for several years.  In the long run..this is nothing.  Things could be so much worse.  He's doing great!  We had him tested for ADHD by a wonderful Psychologist with Mpls Children's.   And the speech and OT we did thru Fairview who were also wonderful.  Although we started out having the worse possible experience by the early childhood screening people in our old district.  In the end with us leading the way, we found wonderful help.  Again, I hope my story has helped you in some small way.  It's a scary journey but you certainly are not in this alone and one way or the other your son will be fine as long as you are watching out for him!!

[Sandman2]

     Wow, what a journey you (and your son) have been on!  
I have no clue how you picked up on a link that is over 5 years old - but so glad that you did.   I do think (hope) that in the last several years - due to new criteria being published that it would not take as long for your son to get the help he needs.  Congratulations to you for staying on top of things and pushing the issue.  I do hope you keep watching this forum and the ADHD forum where I post - you have a lot to share.
   I would also hope that you have learned ways to help your child (besides meds) as I am always looking for resources to share with other parents.  So If you have found any particularly good places with info to help your child in his daily activities - I would love to add them to my resource file.
   Best Wishes and once again - thank you for posting!!

[MomofJacob]

Thank you for your story.  I feel overwhelmed by the situation.  We need to decide by next week whether or not to have the school district test him or wait until next fall at which time he'll start another year of preschool (an inclusive program with a waiting list because it stresses social and self help skills, special ed licensed teachers and two aides with low ratios).  There's also the medical community option of testing.  I guess right now I don't trust anyone to judge my son.  I am defensive and afraid that 'they' will diagnose/qualify him for school services even if he doesn't have a disorder.  I'm re-reading what I just wrote and know it sounds paranoid but can't stop thinking this way.  I am constantly analyzing my child - is what he just said normal, is what he just did normal?  This is so much of my day and my nights are when the emotional worries start.  Again, thank you for your words and I will follow-up soon with more info.

[CheleRae]

These are the exact same feelings we had!!!   In the end we opted for the medical professionals.  Although I have learned that the medical professionals and the schools test differently.  Once this door was opened we couldn't leave it.  We felt we had to know.  If only to proove they were all wrong and there was nothing wrong w/our son.  In the end we did get a diagnosis, which doesn't sting as much as an Autism Diagnosis would have.  I've learned to accept who my son is.  I'm glad that eventually we sought assistance thru his school.  His special ed teacher has been wonderful and he's in regular classes just like any other kid except for his daily 20 min with the special ed teacher.  So my biggest fear of him not being mainstreamed thank god never came to pass.  Follow your gut but love your child the same and do whatever you can so he is healthy and happy.