Do You Still Have Autism: Changes In DSM V For Autism Diagnosis

Scary thought.  The psychiatric community is changing the the criteria in diagnosing mental disorders, including the autism spectrum disorder.  The autism community is freaking out, as the separate diagnoses such as classic autism, asperger's syndrome and PDD-NOS (Dayton's diagnosis) are no longer going to be classified by their "type" of autism, but lumped into one diagnosis:  AUTISM.  Period.

I'm not quite sure how to feel about this myself.  But I know that the diagnosis for PDD-NOS has caused confusion with Dayton's educators.  Now that he's diagnosis will be AUTISM, there should be less confusion.  Unless of course "they've" made it more difficult to diagnose a child with autism...  That's a whole new story.

If you're concerned about you child keeping their diagnosis, make an appointment with your child psychologist and ask him straight out!

Anyways, here's the link for the new DSM V diagnostic manual for the autism spectrum disorder:  http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=94

This revision was approved last week.  What are your thoughts?  As for us, it seems even though Dayton fits on the higher end of the autism spectrum, he still meets the criteria listed in the new DSM.


Consider yourselves hugged,

Lou

Are You NORMAL Enough?

If there's one thing that grates on my nerves, it's hearing "Oh, he looks so normal!  I see nothing wrong with him...  You're being too hard on him."

And then Dayton does something that hurts someone.  And discipline is expected.  And I don't wanna give it.  And I see other kids not being disciplined for hurting my son.  And I don't like it.  And the other kids annoy the ever living $#@! out of me.  And the kids actually look for things to get Dayton in trouble.

No, I'm not imagining things.  Before Dayton got grounded, his little seven year old buddy came running in tow with another kid whining that "Dayton picked his nose and wiped his finger on his pants."  Seriously?!  Sitting with his mom, I looked him straight in the eye and said:  "Seriously?!  That's what you came to squeal on Dayton for?  Get out of here!"  His mom, my friend, did NOT look impressed.  Oh well.   I'm tired of the chihuahua barking at my heals, telling me every single time Dayton goes pee, wipes his face, or picks his nose.  Enough already.  Maybe I'm getting fed up with kids in general, or maybe it's the stress talking.  I have been going through quite a bit of stress lately, haven't I...

Anyways...  Yes, Dayton looks normal.  He's a beautiful child, with blond hair and light green eyes, almost blue.  Doesn't change the fact he has autism.  That's why it's called a spectrum.  Dayton fits on the higher functioning end of the autism spectrum (diagnosed with PDD-NOS), but less functioning than someone with aspergers syndrome.  He is cognitively delayed, which means it takes Dayton twice as long to learn something, which means he's behind academically, which means he needs more help in communicating, etc...

Maybe I am a little more protective of him than the average mom.  Maybe I am a little more apprehensive of letting him play outside with his friends without me being present.  Maybe I am a little more anal retentive than I should be.  Maybe I intervene too much with his friends in order to prevent a physical fight or melt down for Dayton.

It's even more frustrating when a friend tells me that I'm too involved with Dayton's play with his friends, or that maybe this is just who Dayton is...  it's a personality "thing."

Really?  A personality thing?  Seriously? 

I hate the term 'normal,' but here we go...

Dayton is cognitively delayed, making him academically behind his peers, yet he is normal enough to know it and feel embarrassed enough to have a melt down.

Dayton's communication skills are delayed, and he has a problem expressing his feelings to others, yet he is normal enough to know when his peers are getting annoyed with him, interrupting him constantly so he can't finish telling them what his problem is, which makes him blow up and throw a fit.

Dayton's got swag like his big mamma.  We tend to trip over air, which means he's not very coordinated and he's normal enough to know that the kids are laughing at him.  This makes him not want to participate in playing sports like soccer.

Dayton needs to be explained the rules to a game, or he'll make his own.  If you break the rules, he freaks.  And he's not "normal" enough to understand that people break rules and cheat ALL the time...

Dayton can't handle loud music, it hurts his ears!  He has sensory issues that most of us don't.  What would you do in order to avoid pain?

These are just five examples, there are many more.  But I'm sure you get the idea.

Personality types are completely different from deficits.  Just sayin.  Like my personality...  I'm a giver, a care taker and a fixer.  I have to fix everything and everyone.  If someone's sad, I have to get them to smile.  I'm a people pleaser, and can't stand it when I feel someone doesn't like me.  I mean come on!  I'm awesome, right?!  As a parent, I don't want my boy being looked upon as a trouble maker or a bad kid.  That's my 'personality.'  I know that sometimes I can be overbearing, and that's OK.  I know as I'm doing it that it's something I can continue or should stop and I can.  Dayton on the other hand has no control over his 'personality.'  That's the difference.

Anyways...


Consider yourselves hugged,

Lou

You Don't Want My Son Around Your Kid At School? Bite Me!

And to think, it all started with this headline:  "This Is Not OK-9 Year Old With Asperger's Syndrome Handcuffed."

You have to check this story out before reading further to understand what transpired here in Winnipeg, during a radio talk show on CJOB 68:  Manitoba's Information Superstation.

The nine year old boy in the above story was bullied repeatedly through a period of time, and like anyone else, he finally blew up.  While you and I may be able to reciprocate in a verbal argument and banter back and forth, children on the autism spectrum just can't do this.  They lack the communication skills to make friends, never mind having to deal with banter and children who bully them.  What makes this worse is that the adults responsible for this little boy continually allowed the bullying, not interfering or helping the little guy out.  They are just as discriminating against this little boy as the kids who have bullied him.  As a parent of child on the autism spectrum, I trust that my son's educators will provide a haven for my child, and protect him from discrimination, not encourage it!!!  It is their job to teach ALL children to be respectful of others and accepting of diversity.  I sure have to help Dayton with this on the home front, why should it not be expected to do so on the educational front?!

The whole drama of the child boarding himself up in a room using desks and splashing paint could have easily been avoided by the aid removing him from the situation and comforting him, then disciplining the rest of the children for bullying him.  In fact, this all could have been prevented by not tolerating bullying in the first place!  When there's an issue, the parent should be called first, not the police.  My goodness...  I'm sure the little guy is completely traumatized over the experience.  This could have been Dayton, they're the same age...

Charles Adler of CJOB radio station took it a step further in discussing this case.  Instead of inviting a professional to the talk show who specializes in autism spectrum disorders, this moron invited PARENTS of children with and without the disorder to duke it out on his show.  I'd love to sit and have an interview with him.  Perhaps I should give him a call.  Actually, I think I will, right after I cut out a wooden paddle board and engrave "Lou's Board Of Education" on it. 

To listen to the broad cast, click on the link below, scroll down to the bottom where the links begin and click on CJOB Am Audio Vault Charles Adler Program On Autism And Inclusion.  The segment of the program begins at the 6 minute and 30 second point.  It's not long, I promise.  And you won't regret hearing it.  While the first speaker, Ken, makes my blood boil, saying "I really do not want to have these kids in my son's daycare or in his school, umm, my son was attacked by a kid who had autism, and I don't want them around, I don't know what you do with them, but I don't want them..."   If I met this guy Ken in person, I swear I'd shove my foot up his a$$.  It's at times like this that I lose all sense of humanity, patience and forget about my Christianity.  It's a struggle keeping the sixth commandment.  And it's a struggle not to swear my head off and shout obscenities at people who are, lets face it, dumb asses. Anyway...  the link: http://www.cosl.mb.ca/?p=1080

While I can appreciate that your child was struck with a child with autism, it is the responsibility of the child's assistant to be present and prevent this from happening in the first place.  As a parent of a child on the autism spectrum, I am mortified when I hear from the school that Dayton has struck a child, so please don't think I'm thrilled about someone getting hurt.  But at the core of any child's behavior is a reason.  Behavior is communication.  This is why children on the spectrum have an aid to help them when it comes to communication with others.  Furthermore, upon evaluating the situation and discussing it when this happens with Dayton, it turns out that Dayton either feels threatened, or is being bullied.  When he can't fight back with words, he will strike out.  So, if you don't teach your child NOT TO BULLY OR MAKE FUN OF SOMEONE, expect him to get beat up.  And as far as "these kids," I really don't want my child to be around your kid, who has no respect for those who are challenged.  So Ken, BITE ME. 


Many families have been reported in contacting advocacy groups such as the Autism Society Of Manitoba (ASM), Manitoba Families For Effective Autism Treatment (MFEAT), and Asperger's Manitoba Inc. (AMI).  These families were distraught about what they heard on the radio show, finding it offensive and handled with a complete lack of sensitivity.

Yes, hmmmm, what did the support groups have to say?  Quite a lot actually.  Here's a letter they got together to write to the head honcho of the radio station...  http://www.mbteach.org/COSL/COSL51/Letter%20from%20Asperger%20Manitoba%20in%20response%20to%20the%20Charles%20Adler%20program%20segment%20on%20Autism%20and%20Inclusion.pdf



Now, while I may be fuming over how Ken and Mary bantered back and forth in the beginning of Charles Adler's radio talk show, I do have to agree with some of what was said in the segment.  Many families with children on the autism spectrum, including myself, agree that "inclusion" is not working well.  It is not working because our kids are not really given a fair chance.  Teachers and assistants are not properly trained or educated in order to adequately "include" our kids.  In the same breath, is it really appropriate for us as parents of children on the autism spectrum to demand our educators to get years of extra training?  Would it take years?  I'm not sure, but I know that at this stage, our educators and assistants are not mandated to take extra training on autism...  Who's responsibility is it to ensure that educators are trained properly?  The government mandated "inclusion," yet hasn't given our educators the tools and know how to do their job.  While I am grateful for "inclusion" and not having my babe dropped off at a building for the rejects, I also think that if the government is not prepared to give money to empower our educators to educate our children, then perhaps segregating our children in a school with professionals that are trained to teach our children should be looked at.

As much as my heart breaks in admitting this, my babe has interrupted his classroom with his fits that stem from not being understood, or frustration at not understanding his school work and feeling dumb.  It's not fair to him or the rest of his classmates.  It's just not fair...  I want more for my child, and I know that given the tools, my son could learn and be a contributing member of society.  Why is this too much to ask for?


Consider yourselves hugged,

Lou

How Autism Changes One's Life

So...  some of you out there have been living with autism for a while, and know exactly how the diagnosis affects your life.  Some of you out there are friends of mine, or friends of friends, or friends of friends of friends...  you know, wanting to be supportive and reading what I post, but sitting there thinking "What the hell is she talking about, I just can't relate..."  God bless you for trying!  You truly are good friends!  Maybe you're new to autism, and wondering what the road ahead looks like.  So, let's go to the very beginning, shall we my dears?

Let me tell you 'bout the birds and the bees and the flowers and the trees...  kidding!

Autism, the definition:  a group of developmental disabilities that can cause significant communication, social and behavioral challenges.  Developmental...  what is that?  Exactly what is sounds like...  the mile stones every child meets are met late...  Their learning is impaired...  Okey dokey...  so ummmmm, what does this look like for those of us involved in the daily care of loved ones with autism?

First, you receive the diagnosis.  Just to make our life even more confusing, we have 5 types of autism spectrum disorders, also known as "Pervasive Developmental Disorders."  They range from a severe form called autistic disorder, also known as classic autism, to a milder form called Asperger Syndrome.  If a child has symptoms of either of these disorders, but does not meet the specific criteria for either, the diagnosis is called pervasive developmental disorder not otherwise specified (PDD-NOS.  This is the form of autism Dayton is diagnosed with).  Other rare, very severe disorders that are included in the autism spectrum disorders are Rett Syndrome and childhood disintegrative disorder.  Now that you've got a diagnosis, you must digest it.  Delays in your child's development can no longer be explained away by your child being a late bloomer.  His or her behavior, actions, delayed speech, quirky behavior and other "delays" are a result of a neurological deficiency... Unless your child has been diagnosed with Asperger Syndrome, your child will be behind academically.  For example, my son is half way through grade one, but sits in a grade three classroom, because failing him is NOT an option...  Grrr...  More of this on the next post, I promise you.  The title to look for is "Choosing The Right School Division For Your Child With Autism."   You will fight for your child's right to a quality education. 

Second, you need to deal with your grief.  Once you understand what I've just told you about the diagnosis and you understand the magnitude of what this means, you will grieve for the child you "planned" to have.  Denial is first.  I remember that one.  "They're wrong, let him grow up a little, jeez!"  Next on the list will be anger "this is so not fair!!!  (and then you throw a huge temper tantrum).  Then we have bargaining.  Oh yes.  "God!  Do you hear me?!  I'll go to church every Sunday and volunteer at the local shelter for the homeless, just take this autism thingy away!!!"  Once you're done bargaining and seeing no results, you get depressed.  The depression stage takes the longest to overcome.  I still struggle with this one (and here you thought I had it all figured out, didn't 'cha?).  Finally, acceptance.  Acceptance is awesome, we can't see the light to acceptance at the beginning as we're in denial or too angry to think we'll ever accept it, but once you do, your child will make a serious connection with you.  Trust me, I've seen it with Dayton.  No one "gets" him better than I do, and he knows it...  Well...  maybe one more person, grandma Karen...

OK, so we've covered the first two things to get through.  These two sound tough, no?  Your life's about to get busy, so hang on to your horses (never, EVER say that to my boy...  He'll look for them for hours!).  Get a calendar, cause your life's about to get busy.  Day off?  Not with autism!  Ready, set go!!!

Now we're gonna dive straight into bureaucracy!  Oh yeah!  You will be connected to family services and they will get you a support coordinator.  Most of these people know nothing about autism, and don't care.  You'd have better luck of winning the lotto or finding the Loch Ness Monster than finding a good support coordinator.  I've found one, but I'm not sharing.  I'll fight you before I let her go!  Then you have to get speech therapy, occupational therapy, physio therapy, all of which you can only get before your child starts school.  If your child doesn't get the diagnosis before age three, you're pretty much SOL or s..t out of luck.  This is the case with my little guy.  I fought for four years to get his diagnosis, and he finally got it, three months before turning eight years old.  Unless of course you have a bottomless pit of cash, well then of course you can have services, any freaking service you want, including a diagnosis!  I don't think there's many of us out there with this kind of money.  As it is, I'm spending just under $500.00 a month for Dayton's medications and social skills group. I'm not going to go into how much I spend for Dayton's supplements, diet and coming up soon, Kumon Learning since the school can't teach him anything.

Once services are in place, your schedule fills up pretty quickly.  I can also tell you that therapy is ON GOING, even after the therapist has left.  It is up to the parents to follow through with the therapy, not the therapists.  It is especially important to follow through when in public.  This is where your child will learn to generalize what was learned in therapy and apply it to real life situations.  During my medical leave, I can honestly tell you I've been so much busier staying at home than I have been going to work!  By the time 7pm rolls around, I'm ready for sleep.

Schedule, schedule and schedule your child's day!  These kids thrive on schedules for two reasons:  once, it shows them what to expect during their day.  Two, it also shows them that some of their favorite things are included during the day.  I know for Dayton video games are super important, and I need to have a picture of a gaming remote in his picture schedule if I want him to comply to any change in his daily routine. 

We're not done yet, we still have all the follow up appointments at the doctor's office and by the support coordinator and CFS if you have them involved to advocate on behalf of your child in the school system.  Yes, managing the care of a child with autism is a FULL TIME job.  Only thing is, this full time job lives with you.  There is no break, and God help you if you get sick, because there's no one for you to call to "cover your shift."

We love our children, they are the air we breathe, with or without a diagnosis.  With a diagnosis of autism, we still give our children everything that goes into raising a child, the affection and love any child gets from their parents is the same for us.  The difference is during our play time...  During play time, every move I make stems from something I've learned from a therapist.

So, if you yourself don't have a child with an autism diagnosis, but have friends that do, cut them some slack when you ask them out and they say they're tired and would rather you come over to their house instead.  Their child is surrounded by their toys and the parent's saving grace - their bed when bed time comes.  Maybe offer to babysit so the parent can take a nap.  I'd kill for a nap right about now.  Offer them an ear to vent.  I've been fortunate to have a good grandma for Dayton, grandma Karen who is always listening to me rant and rave without complaining.  She's been a rock of support to me and an amazing grandma to Dayton.  She actually "gets" Dayton and he knows it.  He loves her for it.

If you've received a diagnosis in your life just recently, don't look at this post and start crying, please!!!  While yes, you will be working with your child much more than a parent of a typical child needs to, believe me when I tell you, it's all worth it.  I wouldn't change my son for the world!  But I wish I could change this world for Dayton.   Remember, everyday God takes you by the hand and says, "No matter how difficult the path you tread...  I will never leave your side."


Consider yourselves hugged!

Lou