Please help. My son is 6 and in kindergarten. He is very smart. He's reading above his grade level and has no problems with his school work. I had a meeting with his school and they are telling me he has a high functioning form of autism. He has a problem with winning/losing, or not getting called on. He will absolutely have an emotional break down, crying so hard he can't stop himself. Sometimes we can talk him out of it, and sometimes we can't. That's the biggie. His meltdowns are very random and very over the top. He has no speech problems, doesn't obsess over one toy, eye contact is about 50/50, he isn't literal.
I've been searching the internet for characteristics of Autism and Asperger's, and I can't tell if they are right. If they are, then I want to do whatever I need to for him, but I feel like they are just throwing in the A word because it's a convenient diagnosis. If they are wrong, what else can it be? Please help. I want to do what's best for him, and I want to help him for what's really wrong. I just don't know where to go to find the answer.
Was this meeting with a multi-disciplinary team (m-team)? Who was at this meeting? Did they have expertise or experience in his area of developmental situation? You can ask for an m-team evaluation iof this was not done already. If he was m-teamed then he is on his way to getting help.
Bear in mind the EDUCATIONAL definition of "autism" differs from the mental health community DSM definition. For educational purposes, they use broad categories defined by the Individuals with DisAbilities Education Act (IDEA). Also bear in mind autism runs a wide range of functional levels and IQ scores.
The 13 categories of IDEA are:
Other health impairment
Serious emotional disturbance
Specific learning disability
Speech or language impairment
Traumatic brain injury
Visual impairment, including blindness
As a parent, you have the right to receive a copy of the evaluation report on your child. You also have the right to receive a copy of the paperwork about your child's eligibility for special education services. If you think they're wrong, you can ask for an independent evaluation at no expense to you. That may be a good route to go.
Nothing should go without your written consent. When they evaluated your boy, they should have sent you something in writing that they were doing this.
It may be a "convenient" diagnosis, but it may be the best they can come up with to get the needed services for your boy.
Autism is not death. I personally know of some very successful adults with autism. My very own daughter graduated high school at the top 10% of her class. She even had some college education.
Many famous people have admitted to having autism or Aspergers:
Daryl Hannah was diagnosed as a child as being borderline autistic
Matthew Laborteaux, actor on Little House on the Prairie
Dan Aykroyd stated he has Asperger's, he may have been joking
Richard Borcherds, mathematician specializing in group theory and Lie algebras
Craig Nicholls, of the band The Vines
Gary Numan, British singer and songwriter
Dawn Prince-Hughes, PhD, primate anthropologist, ethologist, and author of Songs for the Gorilla Nation
Vernon L. Smith, Nobel Laureate in Economics
Satoshi Tajiri, creator of Pokemon
Thank you for your post! It was very encouraging. I must admit when they first said autism, my heart sank. Thank you for being so positive.
This was a domain meeting with the school principal, his teacher, the school psychologist, and two "autism specialists" (I don't know what their specific qualifications are, that's just how they presented themselves). We knew he was being evaluated, and we were so excited to get some help with his emotional outbursts! But then when we had the meeting all we heard were "Red Flags" and "On the spectrum". I thought or I guess expected that they would have looked at several options for his behavior, but that didn't seem to be the case. When I asked if it could be something other than autism the two specialists kind of prickled up and told me that I was welcome to take him to a clinic to be diagnosed. I was just curious if there was another disease/disorder that he could have. Is it just bad parenting? Maybe he's just really smart and weird...like Einstein or Beethoven (but not quite that smart!)
If he does have autism, I'm ok with that. It doesn't change who he is or the behavior we've been living with. My main goal is to get him the help he needs, but I want it to be what is best for him, not what's convenient for his school.
Where can I take him to get him medically diagnosed? What does that entail? If he is medically diagnosed, what then?
Thank you for your help!
You have a right to disagree and get an independent evaluation at no expense to you. It will always be on the back of your mind if you didn't. We did this with our daughter and took her to the University and they did a great job of different specialists looking at her learning styles, her thought process. We came out of there wioth a lot of good info about her.
When you go to thise kinda meetings, I ALWAYS SAY: BRING SOMEONE WITH YOU. These first time m-team meetings are VERY EMOTIONAL for parents. You could and should ask what other options did they consider this is called a "differential diagnosis." You could still ask that.
Autism is NOT A RESULT OF BAD PARENTING! This was a myth that perpetuated about 30 years! Autism is a neurological disorder. Beware of the bad parenting "diagnosis!" This is a diagnosis made up by in-laws, teachers, friends and family and church groups.
Maybe Einstein and Beethoven was on the spectrum, but autism wasn't even identified until 1943. Before that, it was called "other" things.
Just remember after his diagnosis, he's the same boy as before. His behoivior patterns now just have a name. Once you feel okay with his diagostic label, you may want to let him know. He KNOWS he's different. Problem is, other kids make up their own diagnositc labels for him. It id devastating when he starts to believe these made-up labels. Teachers also make up diagnostic labels as well. He needs to know what his ACTUAL diagnosis is.
I don't know where you live, but maybe there is a state University childrens clinic? Maybe the boy's ped may refer him to someone. One thing you got going with the school route is that you don't get health insurance hassles. Autism may be one of those pre-existing condition bugaboos that insurance companies love.
Respectfully, what diagnosis is convenient for the school may very well be what is best for the boy as far as getting school services are concerned. You don't want individual teachers "making up their own diagnoses" I've heard some dooseys: "Oppositional, defiant, stuborn, strong-willed, problem-child short attention span"
Please read my journals. I wrote a lot of the stuff there.
Thanks! I have read both of your journals. They are very informational and supportive. One thing I haven't found (and admittedly I haven't throughly searched) is information about being very emotional, but only sometimes. Are random emotional outbursts part of all this? He just gets soooo upset over the littlest things. And the worst part is, there's no rhyme or reason to it. For example, we were at Karate Class the other day and he raised his hand in response to a "did you get this" question from his instructor. When he looked at me I shook my head no and mouthed "we didn't get that". He immediately started crying. And not just crying, but out of control temper tantrum crying that lasted almost an hour. Even after I explained what was going on he still continued. Now, the very next day he had an argument with his brother which almost always sets him off. But this time when I intervened and asked (as usual) what he should do instead of yelling he said, "just walk away. I got it mom, it's no big deal." ????? This is where I get so confused. How do I parent to this? I really am trying, but when it changes every day I just want to give up. It is so exhausting. I would really appreciate some advice.
Cjildren with autism take things VERY literal "Did you get this" means "did you understand this" He may have had a fit because he didn't understand what he was saying. It didn't make sense to him. Many children with autism don't understand sarcasm or hidden meanings or "double meanings" or "just kidding" One example: The plumber walks in the house the child asks "are you the plumber?" the plumber responds "no, I'm a martian" This will probably cause a meltdown.
If something goes against his set pattern or pre-programmed set of expectatioins -- this causes a conflict in his brain. It's not a little thing to someone who NEEDS structure.
Rent the video RAINMAN with Dustin Hoffman and Tom Cruise. Dustin Hoffman play the part VERY WELL! You see many scenes where he has a tantrum over 1. envioronmental (smoke alarm scene) , 2. change in routine (must see judge wopner, underwear scene) , 3. memory "triggers" that establised a precedent. (bath scene). You also see echolaia (whos on first), attention to details, litteral thinking (walk/don't walk trafic lite scene).
There is ryme and reason if you try to understand. Sometimes something as simple as a flashing burned out florescent lite or a noisy television flyback transformer (the high pitched horizontal scan frequency) can set a child with autism off.
mj talks a lot about returning home and finding a plant stand appearing in the house, She was upset! I think she handled it in a more mature way, but the change visibly bothered her.
Once I closed the hatchback on my car and said to her "watch your head" She replied "I can't watch my head, my eyes are in my head" She got upset because I said something like "keep your eyes peeled out for ..." You can immagine what this meant to her (gross). If you "invite a friend over for dinner" he may expect just dinner and nothing more. Just eat dinner and not stay to chat. Imagine what he thinks if you say "let's have joe here for dinner" Are we Canabals?
I don't think I conveyed what I meant very well. I'll try to explain...
He's not literal, not at all. He talks in slangs and cliches. We talk about his "flip outs" (i.e. tantrums) with him and he tells us if he "flipped out" at school or not. He doesn't get upset at changes in environment or patterns. He seems absolutely normal, though very immature...but only sometimes, and that's the kicker. Sometimes. We have no idea when or why something is going to set him off.
He might cry when it's time to come in from recess or to stop playing video games. Sometimes it's an all out melt down, and sometimes there is no problem at all. He might completely flip out if he gets an idea in his head that let's say, we're going to grandma's, but when he asks if we can go and we have to say no, it could be a meltdown, or he could just look at us and say "well, maybe next weekend." Other things that are possible meltdowns (or not) are disagreeing about which movie to watch with his brother, what we are eating for dinner, asking him to help out around the house, doing homework or going somewhere with dad. All of those things have been meltdowns sometimes, and no big deal at other times. ????
He seems like just an average little boy in every other way, but these random flip outs are the problem that caused the school to ask us if he could be observed, and what causes me so much stress. Is this a part of autism? Is this something that kids who are "on the spectrum" experience?
My neurotypical 16 year old girl has problems with chores and homework!
What you can do is videotape his flipouts and play tape to school teachers/psyc whatever.
One autistic boy of a friend of mine has problems with barometric presure. Some days he's good with something done at the wrong time and the very same thing, he's smashing his hand thru a window on another day. We charted it and found a strong correlation with the weather. Then we looked at the barometric pressure.
A lot of classroom teachers can tell you about general classroom behavioir problems and weather. Sounds strange, but they know.
Do flipouts mean autism? My friend has a 4 year old boy who still throws tantrums and it's bad, it's worse than a 2 year olds. He also takes things very literally. So how do you tell what is autism and what is not? And can the school system assess it? I wouldn't trust the school system that much, I'd go see a specialist and get a second opinion. He might have something else that is causing the flipouts.
Oh, the 4 year old boy, I don't think is autistic. He might be, who knows, but his parents are both musicians and he himself is a young musician, who started playing violin at age 2. So his flipouts might just be his temperment. Sometimes artists are a bit tempermental... but I guess there is a difference between being moody, tempermental, flipping out, and having flip outs that seriously impact how you relate to society.
Anyways, I'd try to find out what your boy does have, if anything, and not be afraid of any diagnosis either.
Yes! That's exactly what I'm asking!! How do you tell what is autism and what is not? Are temper tantrums and flip outs indicative of autistic behavior? His temper tantrums are just like the other little boy....worse than a two year old's.
The barometric pressure thing is interesting. I'll have to pay close attention to his flip outs and see if there are any commonalities. I would have never thought of that. You guys have been so helpful!!
Please, autism does NOT CAUSE tantrums! Buczko can get a second opinion which is a good idea. Even if the idependent evaluation (second opinion) concurs, there may be more information learned about the boy.
Funny, you mention music. Isn't extraordanary musical ability (perfect pitch) one characteristic of Williams syndrome?
Persons with Williams syndrome also tend to have simmilar symtom descriptors as autism. Persons with Williams usually have very good social skills, however.
Williams syndrome is fairly rare genetic disorder. There are definite genetic testing to confirm. Children have very distinct "elf-like" facial features. Very cheerful, easy to talk with strangers. They tend to have a higher incidence of cardiovascular problems than the general population. Also lack of depth perception and an inability to do things like jigsaw puzzles (to see how parts fit into a whole). That's about all I know about Williams syndrome
Hold on now, I don't think I said anything close to "autism causes tantrums".
1.My boy has tantrums
2. The school says they think he has Autism
3. I wonder if other kids who are Autistic have tantrums.
I think that given facts 1 and 2, 3 is a pretty logical question My intent is not to get into a debate about what Autism is or what it does or does not cause. My question is and has been from the start, are tantrums something that is a "red flag" or "indicative of", or "common in children with" Autism, or is there another "disease" "disorder" or "affliction" that it could be. All I want to do is help my son and save just a sliver of my sanity...which is pretty close to obliterated by the way.
This is something I got from our local autism society:
Common Characteristics of People With Autism
The following are characteristics frequently observed in people with autism:
Communication: Language develops slowly or not at all. May display non-speech sounds, echolalia (mimicking words without any understanding of the meaning), may communicate with gestures or behaviors instead of words. Frustration with lack of speech is common.
Sensory: May be very sensitive (hyper-sensitive) or very insensitive (hypo-sensitive) to sounds, textures, tastes, touch, and sights. May be unaware of various physical stimuli such as pain.
Social: May prefer to spend time alone rather than with others. May show lack of interest in peers, lack of eye contact, may seem unaware of others, may treat others as objects, may prefer parallel play rather than interactive play and display lack of imaginative play. May show limited understanding and responsiveness to social cues such as eye contact or smiles.
Behavior: May be overactive or very passive. May not be interested in being picked up or cuddled. May perseverate (show an obsessive interest in a single item, idea or person i.e. flapping hands, spinning, balancing, tiptoe walking, lining things up). May display a lack of common sense, show aggression to others or self. May be resistant to changes in routine.
Play: May prefer to play alone or parallel play. May lack spontaneous or imaginative play, may not initiate pretend games, may prefer to use toys in odd ways i.e. lining them up or spinning the wheels on toy cars.
Splinter Skills: May display great interest and/or talent in an area such as drawing, music, math, calendars, memory, computer or mechanical areas such as complex video/audio equipment.
Individual's with autism usually exhibit many of the traits listed below. These symptoms can range form mild to severe and may vary in intensity from symptom to symptom. In addition, the behavior usually occurs across many different situations and is consistently inappropriate for the child's age.
Insistence on sameness; resists changes in routine
Severe language deficits
Difficulty in expressing needs; uses gestures or pointing instead of words
Echolalia (repeating words or phrases in place of normal, responsive language)
laughing, crying, or showing distress for reasons not apparent to others
Prefers to be alone; aloof in manner
Tantrums; displays extreme distress for no apparent reason
Difficulty in mixing with others
May not want to be touched or may not be physically affectionate
Little or no eye contact
Unresponsive to standard teaching methods
Sustained odd play
Spins objects or self
Inappropriate attachment to objects
Apparent oversensitivity or undersensitivity to pain
No real fear of dangers
Noticeable physical overactivity or extreme underactivity
Not responsive to verbal cues; acts as if deaf even though hearing tests in normal range
Uneven gross/fine motor skills (may not kick a ball, but can stack blocks)
Please note this symptom list is not a substitute for a full-scale diagnostic assessment.
I hope this helps. I apologize for any misunderstandings
I know I can get very emotional at slight things. The reasons vary from case to case. One trigger for me to have an upset, is when I am trying to explain something that's clear and bright as day in my head. I try to speak it out, stumble over my words, stutter, and the other person is confused... The stuttering may or may not happen, but it frustrates me when I try to get my point across and people don't react in the way I expected them to. If I fumble over my words I may try to repeat until I can say it exactly how I have the sentence in my head... People outside of me get annoyed...which in turn makes me all the more vexed and upset.
Also I fail to realize, perhaps the person doesn't get it because they have a different viewpoint. For example I see a field and hear that it's going to be torn down and developed. In my head I want to convince the other person the land is worth saving, but if their viewpoint is excitement to see the new shopping mall, then we are not going to get along... That's something that may be more normal.
On a smaller scale but still equally emotional: This is a real example. My dad will probably rant that I still remember this and I realize now it isn't important, but at the time I really had a tantrum... I came upstairs and found some our dinner napkins wet. Dad was like don't ask about the wet napkins. I wanted to know what happened and why my parents were so defensive. They kept refusing to tell me and I kept asking, until it escalated into a tantrum and argument. I felt hurt because I felt like my parents were deliberately being mean to me by not telling and the thought they were keeping it secret, only made me more irritated.
Bottom line: I took the situation personally. To me my mind tends to break things down into black/white when it comes to people and reactions. Either things go as I expected or they don’t. If not, then it shakes me up to a varying degree.
I tend to jump to the worst cases when it comes to people. I hate being ignored or rejected. Any time I feel like I'm being ignored I start to break down. I feel rejected. But in reality, the person may have either not seen me, had something else on their mind, or if it is happening over the internet, the person may have had some emergency or other important thing come up that prevented them from checking their email that day. I'm trying to pace myself these days and try to recognize when I'm making these assumptions, but it's not an easy process. I tend to think worst first and then try to think more optimistically. Part of it may be my past. In school (grades 2-4) I faced really harsh bullying, both verbally and physically. Grades 5-6 I faced rejection, verbal abuse, and alienation. Grades 7-12 were much better years, but I still got by with very few friends.
I also want ot add, sometimes I get emotional because I feel an innter conflict. For example there was a teacher assistant helping to teach my highschool health class. We were discussing drug addictions. I forgot what he said he was addicted to, but I think it was alcohol and some other thing. He gave up those addictions, but he admitted he continues to smoke even though he's not really addicted.
I was torn between myself, whether I am stepping out of line or doing the right thing. In my head I was stern and confident. In practice, my voice shook and I cried as I spoke...
I tried to ask something like, "If you're not addicted to smoking, then why are you doing it? You must know the consequences because you are helping to teach this class. You overcame your other addictions, you should try to quit smoking too." I mean we studied the effects of smoking... and for him to say he's not addicted but smokes anyway puzzled me to no end... I felt like he should set a better example for the class by quitting smoking. Just how to say that in a nice way?? I felt awkward because I knew my words were harsh, even triggering a few "Ooo's" from the fellow students because I was acting out. But at the time I felt I really needed to step up and be the one to make the difference in this person's life!
Thanks for the info! I have gotten myself super-stressed out about this. This last week has been an emotional roller coaster for what I can see now, is no apparent reason. I have decided that I don't need to have a name for what he does. I've been obsessing about whether or not he fits into the autism category or the OCD category or the just-a-weird-kid category. But you know, it doesn't matter. They can use what ever techniques they want with him. If Autism stuff works, fantastic! If it doesn't, we'll find something else. He's just him and that hasn't changed just because 2 "Autism Specialists" say that he has red flags. He's a sweet, loving boy that happens to flip out. We'll figure it out sooner or later. Thanks for all your help!!
Being a special education teacher, I must say I was shocked to read some of the things I found in the above paragraphs. In order for your child to be put under the label as having autism he must have displayed many of the characteristics of having autism. During your meeting, you should have seen your child's teacher, special education teacher, speech, physical therapist, OT and sometimes the school nurse. Each of these people will play a big role as to what is going on with your child at school. Autism isn't easily defined anymore in the school systems throughout the country. But with they way you say your son is acting does display some big concerns for him in his future for learning. Because I am not there, and can not do a full range of test.... (reading, social interaction, playtime, sensory, large motor skills, fine motor skills, tactile... ect...) then I can not say or say yes. your child has this or no, you child does not have this.... I wish I could visit some of the parents I met on here ..... because they need answers and help. I didn't go into teaching for the money :) LOL I went into it to help students, and parents.
Here are some ideas for you and the teacher to start working on...
1. If you are getting ready to play a game remind the child that it is okay to not win everytime.
2. If you don't get pick this time say "are we going to whine?" let the child know that maybe next time they will get picked do color in the weather graph or be line leader.
3. If your child can not control himself, then quietly tell the child to go to the cozy corner .... ( there should be somewhere in the classroom, and at home filled with blankets, pillows and books soft big objects) for him to chill out, relax and then tell him when he is done crying he can join the rest of the class... he might cry all day, and that will be hard hearing as a parent that your child cried... but it is a step that will be learned, maybe not for a day, but maybe it will take him sometime to learn that it is okay not to be first.
4. Remind him it is not a choice to scream unless it is outside.
There is a child in our building who is high functioning autism... he is in a normal classroom all day, does not present many of the characteristics of having autism until it comes to being potty trained. Yep.... he is in kindergarten and is still in pull-ups. He has perfect vision, hearing, sensory, motor skills, he gets a long with everyone in the classroom but his aggressiveness towards being potty trained has put red flag in his teachers mind and we were able to see this now instead of 3-4 years down the road.
I would strongly urge you to talk to you child's teacher again. Ask for a special education teacher to be there as well. It takes months for the process and final testing to be done. It's not done over night. They will have someone sit in with your child's class for 2-3 days see his interaction. There will be someone who will play games, read, go for walks and give him learning test then the process goes to a GEI team who talks about all the information gathered during this 2-3 month process. Now it is present to you and what your child's teacher, special education teacher may think.
All these different people play a big role.
The special education teacher will teach and help co-teach his regular classroom teacher to adapt to his particular learning style and emotional outburst.
The OT- will work with him using toys, objects and places to re-connect
The PT- might take him on walks daily, practice some sensory issues
The RTI -might take him and read with him one on one with pop up books
All these people are specially trained. They went to 4 years of college, 2 years of speciality school and much more. We (teachers) know what we are talking about. I know you want what is best for your son. Try this route, it this isn't it then okay.... but maybe it is something and you are being a GREAT parent who is active. That's what being a parent is all about. I know its a shock and confusing to deal with all at once, but you are doing a great job so far from what I read up above. Keep doing your great work!
Wow! Thanks for the information. I am a former teacher myself, and I have friends who are still in the profession. The night before our meeting I called one of my friends who is a Special Education teacher and asked her what to expect. Even after all her advice and help, I was still overwhelmed and confused.
Just recently one of the "Autism Specialists" gave me 2 books to read about autism, and I read them cover to cover. My son does not fit ANY of the examples. I'm not being closed minded about autism, I'm ok with whatever diagnosis he may have, but I want him to get the right type of help...ya know?
His teacher and principal are great! I can't stress enough how helpful they have been. It's the "Autism Specialists" I have problems with. What are their qualifications? Do they only know about autism and go around looking for red flags? That's what it seems to me.
When the school psychologist came to our home to ask us 2 hours worth of questions, I told her that I thought he was pigeon holed into Autism. The specialists talked about red flags that we just don't see at home. After several very specific Autism questions (and I only know that's what they were because I researched ahead of time) she admitted that he didn't look like he fit the profile. But, she explained, because Special Ed was state funded he had to fit one of the "Special Ed Categories" in order to get help. She said that he may not be autistic but that was the most likely categorical fit. Now that made sense to me. I understand that there's probably some guy that's never taught a day in his life sitting at his desk making up these stupid specifications and hoops to jump though.
As much as I truly believe in public education, sometimes it's so counterintuitive!
The Educational definition of autisn differs from the Medical definition of autism. The MEDICAL DEFINITION is more specific, The EDUCATIONAL DEFINITION has to follow IDEA federal law.
Bottom line: If your boy gets any help from the school system, he needs to fit the EDUCATIONAL definition of autism. Medically, he may be diagnosed ASPERGERS or PDD-NOS (or something else.). But there is NO EDUCATIONAL DEFINITION OF PDD-NOS nor Aspbergers. So the best fit is autism in the IDEA sense of the word. This way he gets special ed servioces. .
Unless you see any of the other 12 IDEA categories he fits better go for it. But from what you describe, I think autism (IDEA definoition) looks like the best fit to me.
Other health impairment
Serious emotional disturbance
Specific learning disability
Speech or language impairment
Traumatic brain injury
Visual impairment, including blindness
For a long time, autism wasn't recognized as an IDEA category. We parents and other advocates fought hard just to get autism on the board. Now it's there and this general definition kept a lot of children from being left behind.
Oh, and sensory dysfunction disorder is also not on the IDEA list neither, but this nay also fit into the scholl definition of autism.
Perhaps "serious emotioinal disturbance" may also apply. Maybe you can see if that fits better:.
The IDEA definition of autism:
Autism: A developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age 3, that adversely affects a child's educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences. The term does not apply if a child's educational performance is adversely affected primarily because the child has a serious emotional disturbance as defined below.
The IDEA definition os serious emotional disturbance:
Serious emotional disturbance: A condition exhibiting one or more of the following characteristics, displayed over a long period of time and to a marked degree that adversely affects a child's educational performance:
An inability to learn that cannot be explained by intellectual, sensory, or health factors
An inability to build or maintain satisfactory interpersonal relationships with peers or teachers
Inappropriate types of behavior or feelings under normal circumstances
A general pervasive mood of unhappiness or depression
A tendency to develop physical symptoms or fears associated with personal or school problems.
As I looked it up, the word "serious" was dropped in 1997. Now it is refered to as "emotional disturbance" Same text, just a name change.
No, I agree that autism is the most likely educational category. I just don't think he fits the medical profile. As I said earlier, once the school psychologist pointed out the need to fit him into something it all made sense. I felt so relieved that I finally understood! If that's what we need to call it to get him help from the school psychologists, then so be it.
I did google sensory dysfunction disorder also...I don't know. He's just an emotional kid. He cries a lot, throws temper tantrums, and he's really, really smart. Those are his abnormal qualities, and that's all. I wonder if we (the school and me) are just reading more into it than needs to be. The more I look at all these disorders or dysfunctions the more I think that maybe he's just emotionally immature and we're trying to make fit a square peg in a round hole...ya know?
I should mention that his tantrums are getting less and less and it's becoming easier to talk him though them. All in just a couple months! BUT, I have no idea what they are doing with him at school. I don't know if he's just growing out of this, or if they are really working hard with him. I kind of expected to hear more from the team after our 2 hour meeting with the psychologist, but nada. I know I should call the school, but I really don't want to deal with the "autism specialists". I have such hard feelings toward them for being so insensitive. I'm afraid of what I'd say to them! I'm just glad he's getting better.
Trust me, whatever you said to the autism specialist, they've heard worse!
I remember one autism speciaslist who realy didn't want my daughter in her class, because she was too high functioning. I KNEW in my heart that her class was the best place for her. They were doing things like Lovaas treatments and stuff. She said she was "autistic like but had too much going for her." But she was working doing her m-team evaluation for the "gatekeeper" non-profit agency (this was before IDEA) that determined who got in and who didn't. So, I had to bite my tounge. Now that I look back, they were a bit aversive in her class.
The hard part was that she also ran a support group and I only went once and never again. I went to the school board public hearings for the group to help their cause, but I will not go to the meetings.
That doesnt sound like autism to me. The big distict factor is autism causes communication problems and delays. If your son doesnt have that than its not autism. That doesnt mean to say he isnt on the 'spectrum'. But a lot of things can causes mood changes and meltdowns. How about food intolerances? Have u tried going gluten and dairy free. Ive seen some of these kids improve tremendously just from removing the trggering foods out of their diet. You can try it..cant hurt!
I have some thoughts for you. I am the mother of a 4 y/o boy who is dx'd with PDD-NOS which you probably know puts him on the autism spectrum. I am also the mother of an 8 y/o boy who is gifted but with a bucket load of LD (aka 2E - twice exceptional). I'd like to recommend that you do some searches on asynchronous development. Something that is very common in the gifted. My 8 y/o was a lot like you son. He has improved greatly but there are still issues. He has some mild OCD-ish issues and mild anxiety as well. Check out the website www.sengifted.org, this is a great site about promoting the emotional needs of the gifted. Oh, I forgot to mention that when we first started trying to figure out what was going on with my 8 y/o they were saying he looked Aspergerish but I don't think they feel that way anymore. Also, keep in mind that boys are slower to mature emotionally anyway. Also the OP who mentioned checking out sensory integration dysfunction, don't discount it too quickly. Look for the book, The Out of Sync Child. But ultimately it sounds like your son needs a THOROUGH evaluation if they haven't already done so. And definitely get a second opinion if the results don't make sense to you. BTW, did they do an IQ test on your son as part of the assessment? If they didn't I would request it as part of the THOROUGH evaluation.
I know that an IQ test is in the plan, but I don't know if they have done it yet. We don't meet again until late in April, and you know they won't offer up any info unsolicited! We have not gotten him medically checked yet. I don't know if it's because I'm in denial that he needs it, or because I'm afraid of what they might tell me. Probably a little of both. I don't think he's gifted necessarily, but I don't really know how to judge that. He's in kindergarten and has already gone through the 1st and 2nd grade reading texts, but he's not ready for quantum physics or anything! hahahaha...
There is definitely something different about him, but it just seems so un-autistic. I suppose it was easy to deny the problem because I thought their diagnosis was made rashly. But, after visiting that site, that seems more logical than anything I've found so far. I never would have thought of that. It has really made me rethink getting him medically tested.
Thank you for the extra option! I will update as things happen...
I forgot to ask earlier. Do you have any idea what triggers your son's tantrums? Does he tantrum more when there is a lot of noise or sound? Does he tantrum when something changes unexpectedly?
All children will tantrum and most will tantrum if they can't get their way. (for instance if they don't get a toy they want or can't eat candy before dinner) that is normal behavior for both normal and autistic children.
What I'd like to know is more detail of his triggers. It could be some of his triggers are sesnory, but you may or may not have made that connection.
I get in an emotional fit if I am over stimulated with noise and chaos going around me.
It's normal for all people to get to this point some time, but for an autistic person, this stress comes at a much lower threshold.
For instance I doubt many people can stand next to a jet engine when it takes off. (without hearing protection) and if someone was forced to stay there with a whole lot of planes taking off, they would likely freak out and throw a tantrum. Human ears aren't made to put up with that sound.
With that experiance in mind, now visualize the same pain and stress, only instead of jet engines triggering the stress, it is a busy street and car traffic. (not to mention the occasional harley or no muffler car that cruses by)
We have found no correlation with his triggers (not to say that there isn't one, we just haven't found it). It does not seem to be sensory, or due to environmental changes. He doesn't seem to be bothered by big crowds or lots of chaos. His father and I are both musicians and although the school seems to have noticed that he is really bothered by certain notes in music class, I chalk that up to wishful red flag seeking. We have never noticed that in him.....ever. They claim to see other red flags also, that the school psychologist pretty much ruled out when she visited our home.
Most of the time his tantrums are because things aren't going his way. For example, we just got back from Grandma and Grandpa's. It's about an hour and a half drive. When he saw the sign that said "Our Town" 25 miles he had a mini meltdown because we weren't getting there fast enough. It was pretty easily deferred, but we never know when or why they will be that way. Last week he melted down almost completely because a star fell off his karate uniform (they get stars when they bring in good homework). We were about to go to class and he and his brother each had a piece of work to bring in. His brother's star had not fallen off, which meant brother would have 2 stars and he would have one. We spent 20 @#$% minutes in meltdown because he wanted to have the same amount of stars as his brother. I could not reason with him to save my soul. No matter how many times I said "You can have 1 star or none" he'd answer with "The same as his". The only thing that saved us that time was that he (just by chance) got to lead karate class that night. He just blossomed when he got the chance to lead.
Like I've said, sometimes things we are absolutely sure will trigger a flip out, won't and other times the teeniest thing (like 25 more mi) will be devastating. We have been trying to keep track of them, but there just seems to be no rhyme or reason.
Looking at the sengifted.org website was really eye opening. That looks the closest to who he is than anything I have ever seen. As I was reading through it and other websites, I just felt like it clicked, you know? It seemed to "get' who he was, where as the school just seemed to force him into a category and not really care who he was (I know why they have to do it that way, I'm just saying...) We've contacted a counselor to ask about medical testing and what our first step should be. The longer this goes on, the more ready I am to hear what the Drs have to say.
I found some tips off a magazine that may help. It was in a Parent's magazine and had some tips for quieting tantrums. Maybe some of these will help. I'll try to get the main points and summarize in the limited amount of time I have:
1. "It's not fair!!!"
Don't say "Well life isn't fair!"
Instead try to empathize with your child and acknowledge he is upset. Let him know you agree it's upsetting and talk with him. Then talk about things he can do.
2. "But whhy??"
Don't say, "Because I said so"
Turn the question around and ask, "Why do you think I am saying no?"
And you can give some hints if your son is having trouble.
3. "You can't make me!"
Don't say "Yes I can!"
Try lightening your son's mood by engaging in a game or joke. Try making your request into a game, for instance see if you can clean your room in two minutes (and set a timer).
And if those don't work then set up a consequence and stick to it. You can also try to explain things in a way he can understand such as your case, tell him you can't get to your hometown because it is still too far away. Perhaps say you don't have a space ship and can't go the speed of light. Or perhaps you can find a rest area. I know when I was younger I hated being cooped up in a car... Especially if I had to go pee...and the nearest exit seemed to be years away.
One of our favorite games was to pick something like a bridge and see who can spot that landmark first. The winner got bragging rights… At least it worked to keep us alert and not ready to choke each others’ throats in exasperation and boredom.
These were some tips from the Febuary 2008 copy of Parents magazine. The last paragraph I paraphrased to include something unique to your situation. The example they used was getting their child to wear a seat belt by saying the cops will get mad at daddy if they find out he is not wearing his seat belt.
Well, here's the final school scoop, I guess. We met with the team last week. They did several tests, all of which came back completely normal (the only one I contest is the IQ test, but that's a whole 'nother story!). Last time there were two autism specialists and the autism coordinator at the meetings telling me how many red flags there were and that I should join an autism support group. This time there was only one autism specialist and she was in the back typing the minutes as we spoke. You know, last time they were SO sure that he had autism, but now all of a sudden, he has nothing of the sort and he qualifies for no special services through the school system....but we should take him to a counselor (out of pocket, of course) to help him with his coping skills. I TOLD them last time that I didn't think that was the case and they didn't listen to me, now I'm just S.O.L. and am no better than when we started.
So, that's it. Thank you all for all your support. When I was really scared and at my lowest, you really helped me feel like everything was going to be ok. Thank you, thank you, thank you!!!!!!
youre not S O L yet. They may have won the battle but not the war. Federal IDEA law gives you the right to an Idependent Educational Evaluation (IEE) at their expense. Just ask for it in writing and pick a specialist and go there. You do need to release the records of this evaluation for them to use it.
What exactly is that? Could you please explain a little more?
We went to a counselor (as instructed by the school) and it was such a bad experience. Not necessarily for him, but for me. She said that he doesn't seem like he needs counseling, and for goodness sakes why haven't we taken him to his pediatrition??? She thinks he shows signs of ADD/ADHD (which he does not) and wants to medicate him to help his "fidgeting". HE'S 6!!!! What 6 year old can sit through an hour long session, and the first one mind you, and not fidget? Ughhh! This seems to be getting worse with every turn. He clearly has autism, he shows no signs of autism, he needs counseling, why are you in counseling?, he needs a pediatrition....and meds! This is crazy!! Did you all go through this too?
Yes. Still going down that route.
The thing with any of these disorders is that they are usually diagnosed through professionals observing them. Children can vary day to day and throughout the day. Professionals may also have their own agenda.
I think the one thing you can agree on is whether you think your son has difficulties. Then it is a case of trying to tease out what they are. This is especially difficult if you have a child at the more able end. There are alot of disorders that have some charactertistics in common ie. Autism/ADHD/OCD/Sensory Difficulties/Executive Function Disorder etc. For example a child with autism may fidget because they don't understand what they should be doing; they may have sensory processing difficulties and need to fidget to be able to get feedback from their body; it maybe a different kind of sensory thing where they are fiddling with something in their hand; children with autism also have difficulties with focus and attention. They can concentrate for hours on a topic they like eg. making a lego model, but may be unable to pay attention to what they should do in class. ADHD can have some similar charteristics to that so that the child may find it difficult to pay attention and concentrate and may also find it difficult to sit still.
Sometimes it just takes time for everyone to see and agree what the difficulties are. I presume all these concerns were brought up for a reason.
My son can also over react emotionally to some things, but can cope at other times. When he does get upset he says he cannot control the feeling. So in some way they get flooded with emotion which is out of proportion to the event that triggered it and they then have difficulty getting it back under control. So they can be upset for hours afterwards. As he is verbal I would start trying to get an explanation out of him. Is it the event or can't he stop the feeling.
Has he been seen by a speech and language therapist and assessed. Sometimes their expressive speech can be age appropriate or advanced, but their understanding/ processing of language can be at a different level. For example my sons expressive language is age appropriate (age 7), but his receptive language comprehension is at age 3. So he gives the impression of being okay from a speech point of view, but in the classroom he cannot function because he has got no idea of what he is supposed to be doing.
Whatever disorder is mentioned to you, have a read about it. But in time you will begin to see where he fits into the plan of things!
If he does have difficulties, as he gets older those difficulties with have an affect on higher functions so it will become more obvious because the difference between your child and their peers will widen. If he is doing okay academically you may notice that the differences widen around social communication, so you will know that that is the area of concern.
But one of the first things to understand is that there are two routes to an evaluation. One is through Health and one is through Education. Through health you would expect to see Speech Language Therapist, Clinical Paediatrician, Clinical Psychologist, Occupational Therapist, (maybe Neurologist). I am not sure in the US who you would see through education. MJthewriterdad knows more about that.
I did find it helpful to get a private report from an Occupational Therapist who had expertise in these types of disorders.
How to go about an IEE? As far as I know, just write a letter of your intentions and include the dat of the school's evaluations and reasons why you disagree and let them know you wish to pursue an Independent Eval;uation inaccordnace with federal IDEA law.
Then just set up an appointment with someone. I would recomend a university clinic or child study center. We took our daughter to a State University (Big 10) Hospital child development study center. They did a good job of everything.
When all is done, you must sign a release of records and information about the evaluation to the school to give them access to the records.
Thank you. I will absolutely look into that.
When the counselor suggested meds I told my husband that we needed to take him to the children's hospital and have him medically tested. If nothing else other than to keep the mental health professionals from "diagnosing" him with anything else. We have put it off because our insurance is SOOO bad (even though we pay out the wazoo for it) we know this is going to put us into debt...which I would do without hesitation if I thought there was something there that was serious, or affected every aspect of his life.
We think that there is something not quite right, but we don't think it constitutes all this craziness. He needs help coping with disappointment. His temper tantrums have evolved into a stubborn refusal to do anything, he still cries easily and is very sensitive. That's it. Other than that he's a happy healthy normal little boy.
I have an appointment with the counselor this week by myself, and we'll see how that goes. If she continues to talk about meds or ADHD, I may be calling the children's hospital sooner than I think!
Thanks for all your help.
Wow. I could have written EVERYTHING you said! My son will be 8 soon, and I found your questions when I was Googling "excessive drooling in eight year old. The meltdowns, EVERYTHING about them... absolutely the same issues we're having. Hmm... I must agree w/ all the ADD/ADHD possibilities, but yet, like you, *I* don't see it either. I was wondering if he was autistic, or had mild asperger's as well!
Wow. I'm just floored reading this, and I've bookmarked this page to show my husband. I feel like I've reached some sort of breakthrough. My husband was just saying tonight "Well, I don't really think there's anything *wrong* with him." My reply "Honey... there isn't anything *wrong* with him, but he is sooo outside of the norm, on so many different levels, and it's affecting his life. It's *something*, and I just want to know what it is"
I will be coming back here to find out what you're finding!!
well, it's been a while! ;-) I thought I'd update, for anyone who cares.
I have found, purely by accident, a holistic solution. Normally I have a healthy skepticism for holistic treatments, but this has just been amazing! I had neglected my self during all the school hoopla and finally had to go see my chiropractor so that I could walk upright. I explained that I hadn't been in because my son...blah, blah, blah. She asked if she could take a look at him (free of charge). I said, "sure, why not?". She did some kind of emotional therapy on him. It was eerie how well she was able to pinpoint his "issues" without me giving her even the slightest heads up. She'd touch certain points on his body and then tell me "he has problems processing", or "he has very sensitive feelings" !!!! She was saying almost word for word some of the things that the school counselors were saying. When we got him home he was a completely different kid! She is now working on his brother as well and things can't be better. Thank you so much for all your help and advice! I've really appreciated your willingness to listen and offer suggestions.
Autism is not the same per se as Asperger's syndrome. The symptoms have a crossover, butthe diagnostic criteria are different. Asperger's hasn't been widely recognized in many places until recently. It seem that your son has it (although I would say it is something you are, not something you 'have'). I 'have' Asperger's syndrome; I've known that since I was a teenager, and I was finally diagnozed aged 34. Your son will benefit hugely from a diagosis, if indeed he is on the spectrum. Try the AQ test (Google the term, you'll find a version you can take on his behalf). PS , I love being the way I am. I wouldn't have things any other way.
I'm sorry to break the news, but Asperger's is no longer considered a diagnosis. It has been taken out of the DSM. It is just autism now. So, yes, autism is now considered the same as Asperger's. But, that does not mean that everyone on the spectrum is the same. In fact, quite the opposite is true.
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