Asperger's and School Phobia

Hi my son in 14 and I have have trouble with him every year going to school. It gets worse every year.
I noticed that something was wrong with him when he was like 5 months old. He didn't google or anything. I know something was wrong. I asked doctor on top of doctors for help.
He was 13 months old before he learned to walk, crawled at 16 months, said his first word at the age of 3.
I was so worried I was taking him to as many doctors that I could trying to get some answers and all they ever told me was that he will learn when he is ready, But I knew someting wasn't right. So finally I got incontact with this program called first steps. They came to my home and talked with me and worked with him. they did speach therapy, worked on his motor skills you name it they did it. they taught me how to teach him. I don't know what I would have done with out the first steps program, I think my son wouldn't be where he is today if they hadn't helped.

They only worked with him for 6 months, and then I was on my own. they did tell me when they left that they thought he was Autistic and to never give up on him that he was very special.

He has problems being in crowds, it makes him cry, sweat, shaky, really nervous
when he goes to school it is so bad that he vomits and sometimes has a bowl movement on his self.
has bad headaches. He also complains that his stomache is always hurting.
He has no friends. when he did have friends he was mean to them by saying youre stupid , always something hurtful and pushed them away.
He has to have everything his way. his room can be a mess and he knows if someone has moved something and he will get very angry. when he was smaller if his food touched in his plate it was no good and throw a fit and say he is not eating and he woldn't even if you made him another plate. he is getting better with that.He plays with his cars and if you touch one while he is playing he cries like a 2 year old would. He can't stand pain at all. he can barely cut him self and he will cry for hours. When I take him to the doctor he goes into fits it takes about 5 people to hold him to keep him from running out just take his blood preassure. He sees a needle and it gets worse.
he won't look at you when you are talking to him...most of the time he won't answer you when you are calling his name. every thing has to be about him. like if we want to go out for a family dinner we have to drive around for ever  see so he can see how many people are there, most of the time we just leave.
he won't socialize at all.

He just turned 14 in May and I don't know what else to do, I feel like I am going out of my mind. Till this day we still have no diagnosis for him. He is under two phycyitrists right now. It is frustrating because we can't get answers. I have done so much reading on the internet.

I just don't know what else to do this has affected the whole family. we don't go on vacations anymore. I have to get a sitter for him when I really need to go out because he won't go. He wants to stay home all the time. don't have any friends at all, it kills me to see him go throught this and I don't know how to make it better for him.
this past school year I had to put him on home bound because school was way too hard for him and he has all special classes. It is getting closer for school to start back and he is already worried about going  back to school.

can anyone give me some advise on what to do and can this be some form of autism?

[whatever676]

I forgot to mention that he likes to tapp on things alot...when he wants something from you and you don't answer he will tapp on you , and we can just be watching tv or haveing a converstation he will interupt you and talk over you and he will say mom and you answer him he will continue to say mom over and over. I have to hold him and look into his eyes and say what do you want and then he will say I din't want anything. and then I will explain to him that he was saying mom and he gets mad and says I didn't say that. He is always right never wrong no matter what it is.

[Sally44]

What country are you in?
He sounds completely autistic to me.  How have the professionals/specialists missed this for so long?
Have you asked for a multi-disciplinary team evaluation of your son through Health.  This is usually started by your doctor/paediatrician referring you.  Ask for professionals with experience/expertise in autism to assess him.
So have Speech and Language Therapy never been involved with your son?
What kind of school does he go to?
To get a better idea of what autism is have a look at the Clinical Diagnostic Criteria.  If you google DSM IV autism, it will bring up a list of behaviours/characteristics that the specialists will be looking for in your son.
You can look at the Health Page which you access through the link on the top right hand corner of the med/help/forums page.  I have just copied the DSM criteria into that, but basically it is usually called the triad of impairments so there are problems with speech which is delayed or disordered.  There can also be literal interpretation of speech, echolalia and perseverant speech.  For examples of that go to www. specialed.us/ autism/verbal/verball11.html (don't put in the spaces, I did that so it would print the web page  in this reply.  That might explain the continual questioning.  It also explains echolalia which is repeating words/phrases/TV jingles/noises etc they have heard either immediatley or later on.
Alot of what you mention in your post are sensory issues (as well the anxiety and stress that not being able to cope in the environment will cause).  If you google the name Olga Bodgashina it will bring up a list of articles by her.  The web site is www. autismtoday.com/articles/ Different_Sensory_Experiences.htm.  (again take out the spaces to get the webpage).  The professional who would deal with these issues is an Occupational Therapist.
But you need a diagnosis and I can't believe that you have had to struggle with no explanation or support for 14 years.
Please post back with more info - and look at the links I have mentioned.
If your son is autistic (which sounds very likely to me) and he has never had the supports in place to help with his difficulties and he has Sensory Processing Disorder or Difficulties then I am not surprised that he has an aversion to school.
You are right to be very concerned.  If he is getting so anxious to the point of vomiting and defecating at the idea of going into school then you MUST act on those behaviours as being a true indication of the level of distress it is causing him.  This is not his or your fault.  I would take him to the doctors and get it on record the level of stress he is under.  It would be really helpful to know what country you are in.  If you are in the USA I would recommend getting a solicitor to get his diagnosis and appropriate schooling sorted.  It is totally unacceptable that your son is being put through this level of turmoil on a daily basis.

[Sally44]

The aversion he has to his things being touched etc can be down to anxiety around change.  It is also explained by Olga as Gestalt Perception.  This is when all aspects of the environment are taken in as being part of the experience.  So his room is his room as long as he knows where everything is (does have to be tidy).  As soon as you move something it changes the overall 'picture' of his room in his head and therefore makes his room 'different' and 'not familiar'.  This is very unsettling to them.  Not all autistic/Aspergers children are like this or to this extent.  But I wil give you a recent example of 'change' upsetting my son.  We went into a cafe to eat dinner.  My son wanted chicken nuggets, but the lady said 'we don't do chicken nuggets anymore we do chicken chunks'.  Straight away my son is getting upset because he doens't 'recognise' the food as being the same or similar to chicken nuggets.  Therefore he changes his mind and says 'I don't want that then I want fish fingers'.  The lady said 'we don't do fish fingers anymore we do fish chunks'.  At this point he is crying and screaming and lying down in the middle of the restaurant queue!  They cannot adapt information they have to changing circumstances so changing the name of the food really made it unrecognisable to him and caused alot of anxiety and stress.  There maybe something of that with your son and his need to separate food on his place (this is autistic behaviour).  If it is separate on the plate it is still carrots (for example), but if it touches another food it is in some way contaminated by the touching of the other food and is it now still carrots?  For along time my son would not eat food that was a mixture of foods eg. soups or pies.  He likes his food to be identifable as a separate category/name of food - but he's okay with it touching another item of food.
Being over/under sensitive to pain is very common.  My son will cry for hours if he is stung by a nettle.  But he can hurt himself and chip a tooth or get a black eye and feel nothing.  With Sensory Integration problems the child experiences different levels of sensory experience and it fluctuates throughout the day and day to day.  So he may run for cover if I get the vaccum out and cover his ears frequently.  But he has chosen to take drum lessons at school!  Sometimes it is the fact that the noise or touch is sudden and unpredictable that sends them mad.
Not making eye contact is common.  My son can make some eye contact, but finds it hard to look and listen at the same time.  So if I want to tell him something I have to 'talk to the wall' and not demand eye contact.  If I make him look at me he will look but not hearing anything I say.  
Appearing deaf is also very common.  This maybe because he is engrossed in doing something and his hearing is 'effectively shut down'.  This is a coping strategy to limit incoming sensory stimulation.  If you force him to listen he may get angry or upset because you have caused him to have to switch senses and that may cause him to lose his place in the process of what he was doing or thinking at the time.
Don't interpret his need for sameness/rigid routines or rituals as being selfish or always wanting his own way.  This is autistic behaviour.  They need the sameness because that is the only way they recognise the situation.  The want it done in their way because they cannot predict the outcome if it is done differently and therefore it has to be done the same to get the same outcome that they want.  They cannot adapt or be flexible because you need to be able to generalise information learnt from one situation to another similar yet different situation.  They cannot do that.  They learn how to do something in one way and will always want to do it in that way regardless of whether you can see a better way of doing it.  That is autistic.  These difficulties can be worked on but they need specialists involved who have experience and expertise in autism.
Regarding doctors/dentists.  I have it on record that if my son needs any dental work that they will give him gas.  There is no way that he would let a needle anywhere near him.  For his childhood vaccinations we had to pin him down and we badly bruised him.  If he needs any other medical treatment I will insist that he is given gas.  You have to consider that even if it is not painful to us, if it is painful to him then that is his experience of it.  With sensory problems he may well be experiencing severe pain with something that we hardly feel.  If you bear that in mind you will see that his behaviour is logical and not abnormal.  Who would sit still to receive something very painful?
It maybe the case that there are other conditions also affecting his behaviour.  But everything you mention would be recognised as autistic/Aspergers behaviour.
When I need to take my son out I always given him a pair of dark glasses (Irlen glasses for Irlen Syndrome, but dark sunglass would also help) and he wears a pair of DIY ear defenders (the kind that workman wear to stop noise damaging their ears).  This screens out enough environmental noise/light etc to enable him to tolerate coming shopping with me.

[SueNYC]

Wow.  It seems like you need a school designed for autistic children.  Where are you from?

[whatever676]

I am from Kentucky, there is a autistic clinic in Louiseville Ky, but it's so hard to get an appointment. I am begging his doctor to make an appointment  asap. The clinic only gives a diagnosis. As far as I know there is no autistic shool close by. The schools around here knows nothing much about autism.

[Sally44]

Then whatever the distance you need to go to get the diagnosis.
I am in the process of legal discussions with my Local Education Authority and will have to travel and stay overnight at a number of locations to get private reports from specialists which I can then present as part of my case that my son needs certain specialist supports within school.  If there was an easier way I would take it, but there isn't.
Is your son in a Special School or in a state school for 'normal' children?

[888mom]

I am sorry your son is having problems in school.  My sister who is 8 years younger than I am had difficulty in school, and by 8th grade, she was a wreck.  She started missing so much school due to stomach aches, vomiting, and other illnesses caused by stress.  She had no friends.  My sister is not autistic, but she has mild OCD and at the time had learning disabilities with reading and language.  My mom took her out of school for the last couple months of 8th grade, had to homeschool her the rest of the year, and starting in 9th grade, my mom found a private Catholic school (they are generally the cheapest of private schools and they even take people who aren't catholic) that she would fit into.  it was a 45 minute drive for my mom.  My mom helped out at the school to get half tuition and she was working at night as well.  I was not in a financial situation to help out.

I just wanted to share what happened with my sister.  Middle school for her was a nightmare.  Once she was in an environment with people who accepted her for her differences and personality quirks, she thrived  Had my parents not pulled her out of public school, she probably would not have graduated high school in the top 5% of her class or gone on to college and graduated highest honors there.  School for myself was also hard, but I managed to get in to a science/math magnet school.  I can not imagine how much worse school would have been if I had autism or another disability such as OCD.  My sister has decided to homeschool her own children because she can not afford private school for them and she was so traumatized by the public school system she will not put any of them through public school.

I guess it's all a matter of what we can do, what we can afford, etc. for our children.  Sometimes we can't always do everything we wish we could.  Sometimes figuring out what is the best is also a dilemma... I mean you might end up switching schools 10 times and be worse off than you started.  I am afraid for my own daughter once she reaches elementary school age.  Will she go through what my sister (and actually myself) went through?  Will I need to pull her out of school too?   And if you aren't trained to homeschool someone with learning disabilities, should you really do it at all?  

I wish there were easy answers, easy solutions.  

[Sally44]

Hi, how is it going?  Has your son been referred for an assessment?  Have you had time to find any parent advocacy service that can give you some basic legal advice about your rights regarding school provision and the level of support your son receives there?

[mtgoat911]

It is wonderful to watch a mom take so much time dealing with her sons aspergers
it is great for you to be talking with others and searching for solutions
i am 32 yrs old and have had aspergers all my life, i know that school anxiety all to well
my son is 9 he also has aspergers, now my 6 year old does not have it, but i can see my 9 year old having all the school issues i did, he is having a tougher time then i did, at such a young age
i actually out grew most of my symptoms, but watching my son go through them is tough
i have fought with the school systems in my area since he started school, 2 years ago it paid off
he was placed in a smaller class with 2 teaches, for now public school is ok
when he is older i hope to home school him or get him into a charter school
google kentucky charter schools, also call the tecnical colleges near you, some of them have charter schools for ld kids
let me know if i can answer any of your questions
school terrified me as a child, from day one, i had aspergers long before they new what it was
the solution that was handed to me was a prestigious boarding school in Baltimore, i do not get that decsion, i was struggling with regular classes and at boarding school all the classes were advanced or excellerated
thank God we are learning more about this issue.

[MJIthewriter]

I was breought up in the public school system. It's pretty much a cr@pshoot when it comes to good and bad... My elementary school experience was torture with the other students bullying me. But Jr. High and Highschool was a lot different. i actually did well and was respected for my differences.  For one thing I had a lot more confidence after finding other autistic individuals who have a positive outlook on their autism. I can't express enough what a difference it made in my life to find people who viewed their autism in a positive way.  Rather than seeing myself as defective I saw myself as different, but no less a person than anyone else. I also got to be aware of my hang-ups and be able to work on ways to better myself.  Yes I'm resistant to change, but I found out it is unplesent changes or changes made that made no logical sense in my mind that upset me more than change itself.

If I got to understand why the change and know the logic behind it, then I was much less upset.  I like things my way... Yes, but if people explain their point of view, I can use my imagination to help understand their perspective and overall better my view.
----------------
For me repeating questions: I repeated questions over and over until I could get a "cue" that the other person actually heard me and understood what I was saying. For some reason I didn't know people actually heard me unless they verbally acknowlledged they heard me and sometimes I needed them to repeat what I said to know they were in fact listening.

It was a lack of understanding nonverbal communication.  Now that I've been taught to look for certain cues, it's not as much of a mystery as it was then. I don't need to repeat my sentences, unless I get excited. Sometimes I momentarly forget I said the same thing already. Being quickly reminded helps.

I hope this perspective helps along with the other perspectives. It goes to show how different autism can be. For all autistic individuals and parents, I believe taking a positive approach will go a lot further in the end than by treating autism like a "disease". Too much of the media paints such a gloomy picture and it saddens me...

[kiddiecrazy]

Is it a good idea to homeschool an aspergers child until they reach high school. Wont the majority of their sensory issues be better by then?  Plus, they could get farther ahead acadademically for college.