Life With ASD and Asperger's Syndrome
Our Own Stories and Experiences

Hi! Below you'll find information about our own life experiences with Asperger's Syndrome, although I know now that my son should have been diagnosed before the age of three with Autism, not in 2005 with Asperger's Syndrome. (This page is super, super long. I apologize for how long it is; I am working at getting it broken into individual pages but it's turning out to be quite a project taking a bit of time.)

Asperger's Syndrome "No Longer Exists"

When the DSM-IV (Diagnostic Statistical Manual of Mental Disorders) was changed to the DSM-V (aka DSM-5) in 2013, the phrase "Asperger's Syndrome" was removed.

Now it's described "simply" as ASD (Autism Spectrum Disorders, of which Asperger's Syndrome is/was) but with 3 different levels/degrees of severity (which means how deeply the person and his/her life is affected).

Because this website goes from when my son was super young some of the experiences below were written several years ago. Now that he's a young adult (he's 20 now) I'll also start relaying our experiences now that he's in the "real world".

I feel it's important to keep all of this information available (from when he was younger) to be read because even though my son is 20 now I believe his/our experiences when he was younger are important for parents/caregivers looking for information for their children who are not yet young adults.

This page is a looong. Please bear with me as I will eventually have links branching to other sections of the website so that I break down this information so that it's not so much on one page, and then also I can provide as much information as possible about Autism and ASD's without making this page any longer. :)

New Information And Stories To Be Added

On March 3 2011 I added additional information below here, information about some of the things that happened prior to his diagnosis as well as some of the things that have happened since his diagnosis...

I plan on continuing to update the information on our lives as I find time. 

There's a lot here to read and some of it is very painful to read (he and we went through some very, very difficult times and some of it does come out in my writing) but I'm hoping it's more helpful than painful for anyone struggling through these things.

Even as recent as today I am still learning the significance of things that happened when he was younger, and things that are still happening (I still get hit between the eyes!).

Please note that not everything is in chronological order, it's more as I was typing and remembering everything.

What's Wrong With My Baby?

I always knew that there was something troubling my son, starting between 2 and 3 years old (he's 20 now), but there was never a name put to it.

He hit all of his milestones early. Lifted his head early, rolled over early, crawled early, walked early (8 months!), started jabbering, was a happy baby.

He was current on his vaccinations. Or so I remembered (incorrectly). I've explained a little further down here what I discovered about his MMR shot.

It wasn't until November 2005 that he was diagnosed with Asperger's Syndrome (AS); he was 12 years old.

Through all of my subsequent research I know now that he should have been diagnosed with Autism before he was 3 (my daughter should have been too).

I started this website, for reasons I've explained a little further down, shortly after he was diagnosed.

Kawasaki Disease/Syndrome aka Mucocutaneous Lymph Node Syndrome

He became very ill in January 1995 and I had him in to the doctors day after day, sometimes twice a day, trying to figure out what was wrong, as he got sicker and sicker.

Eventually, in May/June he was diagnosed with Kawasaki Disease. There's much more to this story - febrile seizures, severe deyhdration requiring hospitalization more than once, stopping breathing, firemen and paramedics filling the house, some type of what I now believe to have been "partial seizures", etc. but I'll tell it all elsewhere here at my website.

He was hospitalized and had Immuno-Globulin pumped into him and the next morning he was back to about 80%-90% of himself, but the left side of his face and neck was swollen (the swelling did go down eventually but it was never explained what it was).

But he was back my Cameron was almost 100% himself!

The 911 Operator Told Me I Had Described A Dead Person To Her

He used to stop breathing. Not while doing anything other than walking or sitting or whatever, it wasn't due to being startled or anything like that. He'd stiffen up in my arms, his eyes would roll back in his head, his back would arch, his lips would get blue, and his face would be gray.

I remember during one of my many calls to 911, the operator told me, you just described a dead person to me. This still brings me to tears. He was 18 months old or so. That's about the time his Kawasaki Disease was finally diagnosed.

Autism Starts Settling In - With Horrendous Head Slamming

At the end of the year (1995), shortly before his 2nd birthday, things started changing. Little did I know that Autism, Asperger's Syndrome, PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified) was settling in.

Update August 3 2012

While I have never doubted the vaccine theory as being a trigger for autism for many, I never for once believed that Cameron's MMR shot had anything to do with it because other than him being treated for his Kawasaki Disease he was fine at 18 months.

In 2012 I had need for his shot records so I dug 'em out.

Most kids have their MMR shot when they're roughly 18 months old (or at least that was the way then, I don't know about now) and that's when most parents report that their child started exhibiting the symptoms of Autism.

Cameron didn't have his MMR shot until Oct. 27, 1 month and 17 days before his 2nd birthday. I had forgotten that it had been put off because of his Kawasaki Disease, Immuno-Globulin, and subsequent 3 months of low-dose aspirin therapy.

By January, just over 2 months after his MMR shot, Autism had him.

He started slamming his head horrendously violent slamming on any surface, not just one slam but 10-15-20 slams at a time.

His then pediatrician told me to put him in a helmet and that he'd eventually stop...

That was all he told me!

He did this for a good part of 1996, January into November when he had his first set of tubes put in his ears (he ended with four sets).

Those injuries on his forehead and his nose (in the picture below) are from slamming his head (repeatedly 7-10 times per episode, many episodes per day, with episodes happening every single day) on things even as hard as concrete, and those injuries in that picture, as bad as they look, are actually partially healed!

His head slamming was horrendous. Roughly 18 years later I can still hear his forehead hitting the floor again and again.

Autism Head Slamming Injuries

CHEESE! :)
Notice the red mark near the top in the middle of his forehead?
And his nose? In this picture those marks are actually partially healed;
those are some of the sores he'd get from slamming his head.
That's my sweet girl on the right. :)

I suspect he sustained some frontal lobe damage (from his head slamming) that hasn't been officially discovered yet). In addition he was diagnosed with Rhythmic Movement Disorder because of the way he banged his head at night when trying to sleep and his body movements. Also night terrors.

Prior to his 2nd birthday he never had any of these troubles.

Parallel Play

Story time at night... I'd sit with with both kids (Shelby is 2 1/2 years older than Cameron) to read to them, or go through Where's Waldo?. But Cameron wouldn't directly participate (unless it was a Waldo book). Otherwise he would sit next to me on the bed (him on my left and Shelby on my right) and look at his own book (usually Waldo) while I read another book to Shelby.

And oh my gosh, as I'm writing this I'm remembering "I Hate Green Eggs and Ham Sam I Am!". If it wasn't Waldo it was Dr. Seuss's Green Eggs and Ham.

He used to giggle (oh how I loved his giggle - he really doesn't laugh anymore or show much emotion at all other than over the top anger) every time I'd say:

"Green Eggs and Ham again??? ... again??? I hate Green Eggs and Ham!". And then we'd settle in and he'd giggle again as I read the book with as much emotion as I could. :)

All of the Dr. Seuss books are fun but that was always his number one pick out of all of our Dr. Seuss books. All these years later I still have that one Dr. Seuss book.

Just Slightly Delayed

I was told by specialists that he was *just slightly delayed*.

Ironically, some of these specialists were Autism specialists but they never caught the Autism and at 3 years of age a psychologist or social worker with the group pronounced my son "cured" - needless to say, that person was unequivocally wrong, so way out in left field that he couldn't be seen from the home plate...

I was told by these same specialists to withhold his dinner at night when he threw it off the table (an almost nightly occurrence) and to not let him have anything else to eat, and then he'd be hungry enough in the morning to eat (now I know it was, and still is, issues with tastes, textures, etc., a common problem for kids, and even adults, with Asperger's Syndrome)...

These guys are specialists and never once was the possibility of taste and texture issues addressed (at that time I had no idea but I wasn't the specialist)for Cameron, not tell me to put him to bed hungry.

They provided us with "Birth-to-3" services: an in-home tutor (every single week for almost an entire year) for his speech delay and a behavioral specialist (again every single week for almost an entire year) to try to modify his behaviors.

Severe Ear Infections

He had ongoing severe ear infections. I can't count how many times I was on the receiving end of a very disdainful look from a doctor as he asked me (with an accusing tone) "His ears are blazing red! Why haven't you brought him in?"

He never indicated, or so I thought, that his ears were infected so I didn't know until I'd take him for a "cold" (which seemed to be quite often).

After about 2 years of begging for tubes for him (his ear infections started very early in his life), and the pediatrician turning me down every time, I was told to tell the doctor to use a Tympanogram to check his ears.

I told the pediatrician and he told me there was no need. I told him again "do it".

Within seconds of looking in Cameron's ears with the Tympanogram, the doctor's exact words were "Hmmm.... he does need tubes." (!!)

He ended up having four sets of tubes, the first when he was one month shy of his 3rd birthday, the last set when he was in 1st or 2nd grade.

I found out much later in life that some children with Asperger's Syndrome and other forms of Autism will bang their heads when they hurt because they can't communicate their hurt.

As mentioned above Cameron used to slam his head. I now think that part of may have been his way of trying to make the terrible pain he had to have been suffering go away and another part may have been due to his frustration that he couldn't communicate to me that his ears were hurting.

Updates

September 13, 2011: He's 17 years old. His ears are giving him troubles again. We went into the doctor and had them checked out and sure enough the inner part of his ear has still not formed properly. He'll deal with this problem for life.

August 3, 2012: He's now 18 years old and he had to see an ear specialist again. While he can go dealing with it if he wants, there is cause for surgery to put permanent "T-Tubes" put into his ears. They told him that it's up to him since he's the one that has to deal with it. It's kind of borderline right now so if he doesn't want it then he can choose to not have it done. But if he does decide to have it done I'll support him 100% and make sure the surgery is paid for somehow.

September 6, 2012: He's still 18 years old and he's decided to have the surgery because his ears continually bothering him.

August 2, 2013: He's 19 years old now. He had the permanent T-Tubes put in his ears November 2012. Of course, as most parents/caregivers of kids with autism know, change isn't always the greatest thing and even though the ear infections are gone he grew so used to some of the clogging or whatever was going on in there that now he's not exactly happy to have the tubes, now he wants to go back to what it was before (but I called that before he even had the permanent tubes put in! ;).

Speech Delayed

He was "babbling" and trying to talk but he couldn't talk right. Instead of saying daddy, he would say his father's name, Curtis. But he said it "Lurlis". Then after quite some time it became "Curlis". Eventually he was able to say "Curtis".

I would ask him, do you know much I love you? I would then throw my arms wide and say "This Much!" Eventually he started responding by opening his arms wide and say "mee maw"... He was 4 years old.

And yet according to the Autism and Asperger's Syndrome "specialists" he was "cured" at 3, and not speech delayed.

I'm not a conspiracist nor do I like to get into politics but I do have to say that sometimes it feels like my son got caught in politics because the "specialists" pronouncing him "cured" disqualified him from attending a special school (Lucy Seigrist School) at the state's (California) expense.

Violence Was Part Of Our World And At Times Still Is...

He became vicious; very, very violent - he would pull my daughter and I to the floor by pulling our hair, he bit his cousin in his cheek and drew blood, he would pull the drawers out in the kitchen and throw all the contents throughout the kitchen, he would throw the dining chairs as best he could ... but he was just as mean to himself.

And yet, other days he seemed the picture of content. "Cheese" was always a common word, whether a picture was being taken or not. Whenever he smiled he'd say cheese, cheese, cheese... I have beautiful pictures of him, of both of my kids, smiling and happy.

Before Autism kicked in

After creating the above frame of three pictures I realized that I grabbed pictures from before his Autism set in. I need to gather pictures of him after his Autism kicked in but I couldn't resist putting these here for the time being. What can I say besides, I'm a mom. ;-)

These days (20 years old) he has occasional "blind rages" where he'll damage something, usually something of his, in a blind fit of rage.

And it's not just an angry "kid" acting out, as is shown by the amount of adrenaline displayed during one of these rages.

During one of his most recent episodes he bent one of the newer generation iPods (read solid metal) into a V shape with both ends cutting into his hands.

The way this thing was bent, there's no way he, or most people, could have bent it like he did without major amounts of adrenaline surging through his body.

The physical strength grows, and the senses sharpen, with the increased adrenaline (known as adrenal output). Oddly though, the sensation of pain is dulled even as the other senses sharpen.

That's how my son was able to do that to his iPod and experience no pain when it cut into his hands, the surge of adrenaline allowed it.

No One, Except Mom, Can Hold Him

I can still feel him in my arms. But by the time he was three he was very limited in who he would let hold him but he would wrap his arms around me and not let go (when he wasn't pulling me to the ground by my hair when he was angry) ;-) ...

Before this limitation came into play, he'd let other people hold him, not a lot of other people but some.

Autism was taking my baby away from me. But I had no idea what it was then, it was only years later, with doctors that weren't familiar with him or his birth-to-3 history, that he was diagnosed with Asperger's Syndrome.

And I truly believe that the only reason (when he was finally diagnosed) that it was Asperger's Syndrome that he was diagnosed with was because I had worked so hard with him over the years (instinctively, I had no idea what was going on with him, I just learned what worked and what didn't).

My friend told me that the only reason he was as far as he was is because I put in 110% with him.

If I hadn't have worked with him as I did, he wouldn't be to the level he is today - still no living skills and whatnot but he's definitely advanced in other areas that I believe he wouldn't be if I hadn't have fought to make things work for him.

Controlled Environments, Rigid Schedules, and Transition

I finally learned when he was about three years old that I needed to keep his environment as controlled as possible and that transition was, for whatever reason, a cause of terrible meltdowns (at that time I didn't know *why*, I just knew it was the way it was) ... and when he started Kindergarten I found that keeping a very, very rigid (never to be broken) routine on the weekends (especially Sundays) ensured a better school week (even to today he still has troubles with transitioning)...

I was shunned by my parents because Sunday was always a "down" day for us; we made sure everything happened the same way every Sunday which made it easier for him during the week (again I didn't know why, I just instinctively figured it out). But in so doing we missed out on a lot of family gatherings because my folks wouldn't do them on Saturday, only Sunday. We were shunned because we didn't attend but we didn't attend because whenever we did it would throw Cameron off completely.

A major transition that almost every child with Autism that attends school will struggle with is the shift from elementary school to middle school.

In elementary school the kids typically stay in one classroom for the day, they don't move from class to class.

When they get to middle school all of a sudden they have to go from class to class, school is larger, it's more confusing, and so on.

It's not uncommon to hear a parent say that it was when their child hit middle school that all heck broke loose.

Misbehaved And Not Punished Enough?

First let me clarify that I do not believe in "punishment" - I believe in "discipline". Punishment teaches only fear; discipline teaches why not to do what you did so that you don't do it again.

I was told repeatedly by my parents that I didn't punish him enough. My parents disowned he and I when he was 6 or 7 years old because he was *so misbehaved* and I *didn't punish him enough* and he *wouldn't behave for them* and since I *was no longer allowed at their house, neither was he* and so on...

He was in trouble a lot at school (starting with his very first day in Kindergarten) and I was told by his teacher and the school officials that he was terribly misbehaved...

Kids with Asperger's Syndrome are so very often bullied and the bully knows how to trick the administrators to believe that the child with Asperger's Syndrome is the problem causer!

The very week he started school they set it up so that he met, on campus, with the counselor they contracted out to. He saw this counselor literally every week from Kindergarten through 5th grade.

Middle school starts with 6th grade and that school didn't contract with the counselor so I had to start paying cash for Cameron to see the same guy. He was very good for Cameron, and for the rest of us. Sadly it didn't last long as we moved during Cameron's 7th grade, from California to Washington.

I Did Something Terrible To Him During Winter Break

I was told by his Kindergarten teacher that I must have done something very terrible to him over winter break because his behaviors had worsened so extremely when he went back to school after those two weeks.

Yep, she actually said that to me.

I lived with guilt over that for years, heard those words in my head every day, until I found out that it wasn't anything I did, it was the transition from Kindergarten to home for a 2-week break and then back to Kindergarten from home that caused the problems -- (classic transition issues for kids with Asperger's Syndrome, PDD-NOS, Autism)...

I still hear those words, they still echo through my head. More than once I've thought about chasing down that teacher and telling her what a terrible impact her words had and that maybe as a teacher she should rethink how she says things to parents.

But then I realize it's my frustration and anger taking over so then I let it alone again, until it raises my hackles once again. ;)

Disciplined Unfairly

He was wrongly punished and disciplined in elementary school (I would go to the school and sit with him in the car and eat lunch with him when he was unfairly put on in-school suspension)...

When he was 8, he was denied participation in an elementary school performance because he blew into the microphone during a rehearsal because that's what he'd seen someone else do at some time (kids on the Autism spectrum will often mimic things they see).

In protest, it was absolutely so wrong to deny him participation and I told them that, and because he was so heartbroken that he'd been kicked out of the play and would have been forced to sit and watch the others put on the play, I kept him out of school the day of the performance...

Frankly my position was "hey if they're not going to take the time to look at this and see what's really going on then I'll make sure they don't collect money from the state for him for that day".

In middle school he was unjustly assigned to Saturday "school" because he had been bullied and the bully convinced the school administrators that it was my son who was the aggressor.

I refused to send him because it wasn't school, it was picking up trash on the school grounds AND he would be with the worst bullies in the school and only one adult to supervise which put Cameron at risk of of even greater injury from these kids.

Never let the school do that to your child - it's absolutely terrible (and very dangerous) for a child on the Autism spectrum to be put in that type of situation. No matter how hard you have to fight and no matter what the consequences may be, don't let them do that to your child.

Shunned, Treated Unfairly, And Bloodied By Bullies

Just like you read about children with Asperger Syndrome or PDD-NOS which is Pervasive Developmental Disorder - Not Otherwise Specified or (now with the DSM-V) the varying levels/degrees of ASD/Autism Spectrum Disorders, my son had/has a lot of idiosyncrasies, practices, attitudes, etc.

Unfortunately those traits would get him in trouble at school, and teased and ridiculed (emotional bullying), and physically bullied.

He was *always* shunned by the neighborhood kids and seen as a bad kid by the parents...

His neighborhood bully (this kid was vicious) knew how to make it look to the other parents like Cameron was doing the bad things, that everything was Cameron's fault.

And of course the boy's parents were absolutely convinced that their son was a "perfect child" and "abused" by Cameron; never mind the fact that this kid had at least 100# on Cameron (he had been held back twice in school so although he was in the same grade as Cameron he was several years older and significantly larger than Cameron).

I called the police a couple times when the kid bullied Cameron particularly viciously and of course the police would say something along the lines of "Well his parents [the bully] said that it's your son's fault. Your son needs to learn how to get along with the kids in the neighborhood." (!!!!!)

My son was minding his own business, he didn't want anything to do with that mean kid, and this kid would search him out and beat up on him. It got to the point where Cameron couldn't even go out in our front yard without being harassed by the kid.

The kid was on his bike and chased my son down (who was on foot) until they ended up between two houses and the kid beat the crap out of my son. Another time the kid picked my son up and threw him into the trash can, and so on...

And my son needs to learn how to get along with the kids in the neighborhood? He couldn't even step into the neighborhood without being beat down!

The same kid also bullied Cameron terribly at school and I made the school put the two of them on a "no-contact contract". They were told by the school that they couldn't look at each other, talk to each other, touch each other, nothing.

As a cute side note... As most of us know, our kids are very "black and white", there's no gray, they are extremely literal ... and my son is no exception. ;-)

When the school put the no-contact-contract in place they told both boys that they weren't allowed to look at each other.

Some kid told my son that the bully was looking at him so my son promptly marched up to the office and told them that the kid broke the contract because he was looking at my son.

Technically he was right because that was part of the contract but  when the administrator made that statement to the boys he didn't realize that my son would take it literally.

As was expected (by me, not by the other kid's parents) the other kid broke the contract by calling Cameron a name and the kid was then removed from Cameron's P.E. class. Apparently the kid was on an IEP and they couldn't just move him out of the P.E. class "without cause". His breaking of the contract is what allowed them to remove him from Cameron's class.

Sadly by this time other kids had learned that they could get away with bullying Cameron.

In middle school he was attacked by an older kid who picked Cameron up completely off of the ground and then slammed him down. Blood poured. When the school wouldn't do anything about it we filed a complaint with the police who came in and investigated.

The kid was expelled.

The kids on the street would have their birthday parties or whatever and Cameron was NEVER invited. 

I remember, with heartbreaking pain, one birthday party that was "kitty-corner" from our house. There was my son climbing up the fence to look into the backyard where all the kids were playing and he wasn't allowed to go.

When I had a birthday party for Cameron and invited his entire Kindergarten class, ONE student showed up.

Thankfully he didn't care too much as he was into his cake and presents and skating and whatnot but man was I burned up.

No RSVP and no show ... those parents that think our kids are rude are in actuality the rude ones themselves (and the behaviors they're modeling to their own kids, it's appalling to think of those kids growing up to be just like their parents).

School Districts Can Be Some Of The Biggest Bullies!

After several requests to with the school personnel got us nowhere there was then much "screaming" and threats of lawsuit over the lack of safety contributing to Cameron being repeatedly assaulted.

We were finally granted a meeting with the Director of Pupil Services, the District Psychologist and the Principal and Vice Principal of the school.

My son wasn't on an IEP then but the school knew we weren't backing down. The district psychologist sat and listened as we recounted everything we could think of about Cameron.

She asked if anyone had ever suggested Asperger's Syndrome to us. That was November 2005.

I downloaded information from online, highlighted sections and made notes that were specific to Cameron's issues and scheduled a couple appointments, one with a psychiatrist (med doctor) and one with a particular psychologist whom Cameron was familiar, and comfortable, with.

He was officially diagnosed with Asperger's Syndrome shortly thereafter (November 2005) but the school still didn't care, they still made his and our lives miserable.

We were chided and had veiled threats thrown at us by the school, the district, and even the district's attorneys.

Here's a very out-of-line letter from the Adelanto School District's attorney that we received, and on that same page I have broken down that letter and addressed each point.

If you're having trouble with your school or district, check out the link above to see if it'll help you at all.

Psychiatrists, Terrible Medications, And Psychiatric Hospital Stays

He saw a separate behavior specialist outside of our home for years and then transitioned to a psychiatrist when he was about 7 years old, and put on many different, in my opinion terrible, medications...

He was very sad at times, very very depressed to the point of talking about suicide at least every other day. He did attempt suicide when he was very young (under 10).

He drug a pushpin across his wrists several times and then came to me, threw his arms around me, and cried as he apologized. I still didn't know what was happening but soon found out from him that he was apologizing because he expected to die and he was sorry for doing it.

Before one psychiatric hospital stay he was complaining about hearing voices telling him to do things. His psychiatrist "poo-poo'd" it as nothing. Cam ended up in the psyche ward and the psychiatrist there told us that one of the medications that Cameron's psychiatrist had him on had a very rare side effect... Hearing Voices!! (The medication was Trazodone)

The psychiatrist that dismissed our concerns before Cameron was admitted to the Loma Linda California psyche ward is (or was, hopefully he's not any more) a psychiatrist with Kaiser Permanente in Fontana, California.

When we moved from California in 2006 Kaiser and Loma Linda were not tied to each other but Kaiser didn't have a children's psychiatric ward so they contracted with Loma Linda.

And there's *so much more* and I relayed *everything* to the various specialists he was seeing... I will try to write more about the myriad of his behaviors so that others can read and will probably see their own child in my writings.

If Your Child Ends Up In A Psychiatric Ward

For parents and caregivers in Southern California, if it happens that your child does end up having to spend some time in a psychiatric hospital, Loma Linda is THE place for your child to be (at least then it was and I have no reason to suspect it's changed because Loma Linda is a premiere hospital).

And Washington parents and caregivers, do EVERYTHING YOU CAN to keep your child out of Fairfax Psychiatric Hospital in Kirkland. I'm not familiar enough with Washington yet to know what other psychiatric hospitals are available but Cameron spent 11 days in Fairfax (he ended up there within less than a month of us moving here due to the transition of moving being too much for him - but please note that the reason we moved here was to get help for him and in the long run it was the exact thing he needed; our daughter too, she blossomed when we moved here). Avoid Fairfax if you can.

Many Diagnoses But Never Was Autism Mentioned

He was diagnosed with several disorders including the following:

  • Bi-Polar Disorder

  • Obsessive-Compulsive Disorder (OCD)

  • Extreme General Anxiety Disorder (GAD)

  • Oppositional Defiant Disorder (ODD)

  • Severe depression

  • and more

But never did any of these specialists suggest Autism or Asperger's Syndrome or PDD-NOS.

But once the school psychologist mentioned it...

My Sadness Over His Diagnosis Didn't Last Long

While I was sad about my son's diagnosis of Asperger's Syndrome I was also actually somewhat happy to find out.

It wasn't like it had happened overnight, it had been there for almost his whole life but I didn't know what it was. Finally, I had a direction to go and a better understanding of my son!

My crying was more so because I was experiencing a sudden rush of relief over knowing what he'd been dealing with. It was like someone was writing about him, like they'd been in our home and seen everything.

I've heard that from more than one parent.

Before I knew it was Autism, everything I did to help him was by instinct (and "hit and miss"), but now that I knew what it was I could do better for him.

I started buying books left and right (there really wasn't a lot available online at that time) so that I could get a better grasp on how to work with my son to make things easier for him.

Lofty goals but I was determined to make things better for him...

My Efforts To Help Other Parents And Caregivers

Autism/ASD Diagnosis
"Late in Life"

I was diagnosed this year (2013) with Asperger's Syndrome before the DSM-V was released (it'll change to Autism due to the DSM-V) and I'm 50 years old!! (The !! is to emphasize how late in life one can be diagnosed - it's not about the fact that I'm 50 years old). ;-)  Have you found traits in yourself while doing research for your child/ren (under and over 18), or maybe you've already been diagnosed?

In an effort to help other parents and caregivers (as well as friends / family members / significant others) not have to go through all the nightmares we did, I put this website together.

In addition I want to try to educate "neuro-typicals" about these disorders in an effort to make the world, both present and future, a friendlier place not only for my son but for everyone on the spectrum.

I also want to help parents and caregivers by sharing our experiences and 'ah-ha' moments. For a long time I must have had at least one 'ah-ha' moment every day (and I do still have them even now), and as you learn more you'll probably have lots of 'ah-ha' moments as well. :)

Please make yourself comfortable and enjoy your visit with us. 

Further down below are links to articles straight 'From the Inside'. While there's plenty of diagnostic criteria online and in books, there wasn't a lot of "in the trenches" experiences documented when I started my research.

Since then the Internet has exploded with websites about Autism and Asperger's Syndrome, chronicling personal lives and stories.

But since everyone on the spectrum is different, and experiences can differ so much amongst all of us, I feel it's important to go ahead and continue to build this website and try to find things that work for my son and for your child/ren as well. 

The diagnostic criteria is fine and important and everything but I believe that it's sharing the stories that we all have inside of us that will make the biggest difference in the lives of our children on the Autism Spectrum.

So now, while this website does have some "clinical" information about Asperger's Syndrome, there's a lot here about:

  • How we have helped Cameron and ourselves to negotiate the many twists and turns of living with an Autism Spectrum Disorder (ASD)
  • New things out there to help with the various troubles that go hand in hand with Asperger's Syndrome
  • The drastic and risky change we made in our lives to get help for him
  • Fun, cute, memorable stories of things our children have said and done that only a child with an ASD would do or say (please tell me yours, we all have them and they bring joy to all of us, and you'll smile in remembrance as you're typing)
  • Soon a section where you can tell your stories, past and present, with Asperger's Syndrome, PDD-NOS, Autism (finally a non-judgmental place to unload)

... And just about anything I can find that has something to do with Asperger's, Autism, and PDD-NOS.

If you have something you know about that can help others please tell me so that I can post about it here.

I'm hoping that by writing about our lives and experiences and challenges and successes, that you will be able to pick through it and find things that help with your situation. :o)

If you have any questions or comments or need any help with anything please do contact meand I'll do all I can to help, even if you don't have questions but need someone to talk to or unload on.

Come with me and let's travel this journey together so that we always have someone to lean on; someone to laugh with; someone to cry with; someone who knows and understands the things that those without experience with Asperger's Syndrome will *never* understand; someone who understands and loves our children, and us parents, unconditionally...

Diane

PS: You'll find that many of the pages I've written here (the glimpses into our life) come from an "unhappy place", whether despair or anger or call it what you will.

While Cameron has improved and his school situation is better, and he has a friend now (although things are nowhere near perfect), I'm keeping the pages I wrote when I first started this website because I feel compelled to let others see where we've been.

It is so easy to feel alone and scared and isolated when your child/grandchild, the child you care for and love with all of your heart, is struggling with Asperger's Syndrome - maybe by keeping my lowest of lows available here for reading, maybe I can help someone to feel not so alone.

I really do hope to help in some way...

Some Of Our Stories - From The Inside

January 2006 -

Sadness once again haunts our world...
Sensory perception issues
Medication interactions
Schools and Districts bully too

April 2006 -
Shelby, our 14-year-old daughter and Cameron's sister
Recognizing, Accepting and Making Obsessions Work
The Depths of Despair

May 2006 -
Finally! A positive experience in our neighborhood!
Neighbors can be so cruel :(

February 2007 -
Lost and depressed, just trying to make it through the day...
CDC now says that Autism Spectrum Disorders are as common as 1 in 150
A bleak world this way comes...
A Positive Moment in our Asperger's World
Asperger's Syndrome characteristics demand that you anticipate everything!

March 2011 -
As I have struggled to make ends meet in this darn economy over the past several years, I haven't been able to keep up with things here as much as I want to.

Cameron has made incredible strides and I really want to write about it all, let you know what we've done and tried, what he's done himself, etc.

I do have a few newer updates here, because I try to keep my customers apprised because my work is affected by all of this.

So on this page you'll find more updated information about us, although not really much about the things we've done to get to the point we are at today. But for more recent updates than below, please see this page.

Probably another important point to mention is that because many of our experiences have been so very difficult, I cry every time I write, or try to write, about them. Even now, I still cry about things that happened years ago, even now as I write this I'm wiping away tears (what can I say, I'm emotional, and it's been a long tough road).

But anyhow, that makes it harder to write. I end up in a very sad place, as I'm sure many of you do, and sometimes I just can't write because of it. Plus, I don't like Cameron to see me in tears and because he's around often, and when he's not here I'm scrambling to do as much as possible to keep the income coming in, that also slows me down tremendously.

I'm really very sorry that my stories are so outdated, but I promise to try to get some updates posted. :o)

Diane

December 2013 -
I am still struggling mightily.

Curtis (my husband and the kids' dad) walked out in October 2010 and things have been headed steadily downhill since then. The house is in foreclosure (he has never contributed any money towards any of the expenses) and I'm now in bankruptcy.

We'll have to move probably the first part of March (if we're lucky enough to stay until then) but I don't know where we'll be moving to yet.

The amount of time I spend on Cameron's needs, combined with my own Autism and overall health worsening, since Curtis left has taken me away from my construction documents business so much so that the business has pretty much died, making our (mine and Cameron's) situation more desperate (no income means no money to move our stuff and no money to pay deposits to move in anywhere).

So I'm doing my best to hang on and will continue to try to provide information here, and add more of our stories, as I am able.

I'm opening up and letting it be known here what's happening with our situation because I know it's a common situation, especially for those us with children that have special needs.

A common statement is "well, at least you're not the only one". In all honesty that statement really makes me grit my teeth sometimes but ... if my revealing our situation helps someone by knowing "at least you're not the only one" then I am more than happy to share what's happening in our lives. :)

Di-

Great Instantly Downloadable
Guides and How-To's

If You're Feeling Worried or Confused About Asperger's Syndrome Then This May Be The Most Critically Important Website You'll Ever Read...

I am here to empower parents and assist them in starting to enjoy their amazing children. Our children are individuals before they are their label.

I have over thirteen years experience with ASD / Aspergers / Autism, both as a mother and as a consultant to parents, as well as holding the academic qualifications as 'Post Grad Cert in Advanced Disabilities Studies'. I am currently working on my Masters Degree In Human Services.

A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome

Dave Angel is a social worker with families who have children on the Autistic Spectrum and is the author of a new e-book that answers the 46 most asked questions by parents of children with Asperger’s.

To claim your free 7 day Mini-Course for parents of children with Asperger’s Syndrome please click here.

Parenting a child with Asperger's syndrome?

Learn successful strategies from one who has gone before you.

You want a self-assured, confident son or daughter. Let Phyllis Wheeler, mother of two children with Asperger's Syndrome, tell you how that might be possible.

Learn Successful Parenting Strategies For Kids With Asperger's Syndrome, Including A Point System And Chore Charts. Full Of Key Ideas.

An Outstanding Community for those who are parenting kids with Asperger's Syndrome

Here is An Outstanding Parenting Aspergers Community that you might want to consider joining.

Current members love the site and the creator gets endless positive emails from them.



Get more information on natural remedies for Asperger's Syndrome

aspergers syndrome

New! Comments

Have your say about what you just read! Leave me a comment in the box below.



Back to the top of this page: Life With ASD - Our Experiences

Back to home page: LifeWithASD.com (Aspergers and PDD-NOS)


I'm working at making information easier to find here so please refresh your browser every time you visit a webpage here to make sure you're seeing the latest versions of the webpages. :)


Autism ASD Apps!

Books that I'm currently reading

I'm so tickled that authors have been contacting me and asking me to review their new books for them!



For as much time as I spend researching Asperger's Syndrome this website should have thousands of pages but because my son has Asperger's Syndrome I find that the things I want to work on very often are not the things that I have to work on so I'm still not able to spend as much time on it as I'd like to.

As he heads into adulthood (he turned 20 on Dec 13 and yep I need to update some areas of the website where it has his age) I'm finding that I have even less time on my hands as I spend more time trying to master the puzzle of how to help him transition into "life after high school".

That's where Autism Tomorrow: The Complete Guide To Help Your Child Thrive In The Real World comes in.

It's a guide to help your kids after high school. You'll find parts of the book will be applicable and some won't depending on your child's current age. Although the title implies "Autism after high school" there is still quite a bit in there about what to do before your child hits "real life". But overall a helpful book.

Please contact me if you'd like to send a copy of your book to me for review. I would absolutely love it!

Fiction, Non-fiction, Auto-Biographies, Instructional books, etc. I'm interested in them all. :) And if you autograph it that would be SUPER cool! ;)