Friday, February 7, 2014

Autism Recovery - The Hidden Truth

Originally published in the Schafer Report, 11/8/04updated 8/1/14

1 in 68 children are born with an Autism Spectrum Disorder. What needs to be known is this: Almost half of the children that get Early Intervention make dramatic progress, some even recover. The fastest growing segment are considered High-Functioning, often meaning they can or will eventually function in regular classrooms, have friends, attend birthday parties and grocery stores with ease. Recovery means that these kids are indistinguishable from their peers. Their disability no longer impairs them from having a normal life. They no longer need support such as an aide in a classroom, therapies, and biological intervention. Many children make incredible gains.

See the latest RECOVERY ARTICLE from the New York Times.  Leo was part of the CT study mentioned in this article.

Why is this the case now as we sit here in 2014? Technology from this last decade has brought all these children the chance for real progress and the unthinkable when we were kids, recovery. Therapeutic intervention such as ABA, dietary intervention, and the DAN! protocol has maximized the potential of our children. It’s not just a given that these children spend their entire education in special education. Back when we were kids, it was one-stop-shopping with our pediatricians. Today that’s just not possible and unfair to pediatricians. Twenty years ago, we only had Greenspan’s Floortime Therapy for all special needs kids. Today there are numerous therapies to address our individual children’s needs and the growing variety of disabilites out there. All we now know about our food supply and the environment has dramatically improved the outcome of our children.

Many High Functioning kids can learn in regular classrooms and other places. We all went to school with a kid that was quirky didn’t we? Our kids CAN eventually get to that level of functioning after receiving good therapy and lots of it. Having your precious child go to school just like any other kid is a dream of every ASD parent. Just to go through that door, walk down those hallways that we all remember as a kid. The sounds of a school. The smell of the cafeteria, your papers and books.

Why don’t we hear about these kids? Where are they? What did their parents do to make it happen?

We don't see them because many parents keep the label a secret so their children can lead a discrimination-free life. These parents move on, try to recover themselves, and create a new life for their family. They cannot be public about their past and support autism efforts at the cost to their own kids. Unfortunately, the stigma of being less than perfect still dominates.

Because all parents discriminate.
Parents often do not want their typical kids to play with children with special needs. It is not a concern of mine if people get defensive by this fact. It is true. After all, what has happened to this generation of children will be examined for years, and in no way the dust has settled. It’s a big battleground – from the pharmaceutical companies, to government, to big offenders of environmental contamination, all wrapped up for us in a big bow. No one wants to raise their hand and be accountable. We are still in the Cover Your Ass and Let’s Run and Hide phase of this pandemic.

We all discriminate. Let’s face it, we all want our kids to play with the perfect friend. A mild temperament, similar or higher developmental level, good natured, doesn’t hit or bit, and has a nice mom. We don’t want our kids to pick up bad habits. We want them to have a positive fun experience. Parents discourage their kids to play with the ‘wrong kids’, those that may not look typical, wear different clothes, come from a different socioeconomic background, have strange parents, do poorly in school, or are just plain squirky.

With little information and TV movies to go on, these parents are in the dark about Autism, how vastly different each and every kid with the same diagnosis presents. They are unaware of the fact that this is THE NEW GENERATION of typical peers – 33% of the kids in elementary and preschool classrooms in America have some developmental issue. Pull-outs galore for reading, writing, and other learning challenges are the norm. Having an ASD is now part of the norm. A handful of kids for each class have services of some kind. Really.

All parents know is that they want to protect their kid. They want the best possible learning experience in school. They want to make sure they can learn without distractions in school. They can’t teach tolerance because they themselves are ignorant. They don’t know what to do with an Autistic kid at a birthday party, on a soccer team, or at their house for a play date. It's awkward, uncomfortable. How should they act? What do you say to the mom? They don’t want THEIR kid to be affected in a negative way by an Autistic kid. Often, instinct and fear guides us parents, myself included. Sometimes that's a good thing. For typical parents, ignorance and fear make them choose the easy route - don't call, don't invite, avoid.

Each new school year parents are faced with more and more aides in classrooms with no explanation. Parents lack knowledge about this NEW GENERATION of typical peers. The irony is this - Autism is the norm, part of the typical make-up of our classrooms.

There is no leadership, no information given to parents about what makes up your typical classroom. No one sets the tone. Sadly the school district, PTA’s and other organizations are not straightforward. It’s discussed in small groups of parents off-the-record. Economics play a big role when districts try to accommodate special kids’ needs at their various schools. They must look at their unique population of children that require services and try to accommodate everyone with what they've got - their pool of therapists, equipment, space, transportation, and lay it all out like a big puzzle. For example, one school may have a lot more special needs kids because it’s newer and has the space for therapy. With no explanation, parents grumble and ask “Why does my kid get stuck with 3 special needs kids and their aides in my classroom? One child isn't even in this district!” they exclaim. This adds fuel to the discrimination fire.

Parents have NO IDEA the complexity in fulfilling a child's modified education program – while minimizing costs at the same time. Schools must consider factors like bus routes and sibling separation while attempting to maximize a child's therapy hours AND therapists hours at school. Parents don’t realize that when they DO see a special child in their classroom with help, one of two things have occurred:

*The child has very significant issues that disrupt the classroom, so the school has to address them.

*The parents had to sue or fight like hell to get those services.

Because of the factors, particularly economics, schools are constantly faced with making hard choices, often playing "god" on whom is worthy of X,Y, and Z. Schools aren't in the position to automatically hand out a beautiful program on a silver platter. They do what is best economically first. Incredible isn’t it??

Because the therapists filter information
Therapists are reluctant to share stories about cases where the kids make it all the way through and are blessed with a“normal” life, a life no longer disabled. They are even reluctant to share huge gains. If parents have this knowledge, they feel the parents would expect this outcome. They want the parents to be realistic and not give false hope. The benefits of sharing what can happen, what DOES happen can inspire. It can give the fuel needed for a desperate and overwhelmed parent to figure out what they need to do. This far outweighs the very small percentage of cases where you leave the parents feeling depressed or inadequate or filled with unrealistic expectations. As of August 2007, I can attest to this personally by comparing positive comments versus negative ones I get in my Inbox.

I resent the fact that providers choose to make life a bit easier on themselves, sacrificing hope for certain families. It the PARENT’S right, not individual providers or schools to filter ASD info. This makes me crazy! A friend recently shared with me “it’s like a cancer doctor NOT telling a patient there is hope for recovery simply because not all patients do recover.”

Some providers don’t believe there is ever an end to therapy. Therefore, they do not believe in recovery because it goes against the philosophy behind the intervention they practice. Also, the new technology hasn’t been played out in great numbers into adolescence and adulthood. If it’s not published in a journal with science to back it up, it doesn’t exist to them.

And we all know that answers don't begin in a journal. How many times have you read a piece of research, and ask yourselves why in the heck did they put money into THAT? The general public already knew THAT answer!

Research, technology, and learning grows each day. Parents are the managers. From home-life to the biological piece to the therapeutic piece. No one else is in that position. Any parent would love to share this role - impossible. Every week parents tell me how my story inspires them. “Is it worth it? All this work? All this money? This sacrifice? The confrontation with the
school district?

What if I said no? First, it would be a lie. Second, there may be many parents that wouldn't react by ACTING. Moving their obstacles out of the way to really tackle the disabling parts of ASD. Maybe they would not be as committed. Give up. Thinking that it’s a fight they can never win is dangerous. Each kid can win no matter how close they get to recovery. Degree of severity, age, or other factors should not be an issue towards maximizing the potential of your child, leaving no stone unturned.

Media, and what we can do
The Autism community must press to provide training to schools, particularly education students. Medical students and nursing students, along with others in any caregiving role would be instrumental in changing the landscape on how these children are understood and cared for. The Autism community must press for articles in general magazines and more T.V. about the enormous differences within the spectrum. How about an article sharing the day in the life of a mainstreamed child, with viewpoints from other parents and their peers? Don’t get me wrong, I’m happy about any Autism press. However, providing stories only about the stereotype increases awareness about Autism but doesn’t provide any new information about the profile of our children today and how that impacts our children's’ school experience.

We need education. Nobody is facilitating relationships between typical and ASD parents. Although Autism and Aspergers are trendy these days in media, the subject is taboo in real life. We are not utilizing the information that is so accessible for all to see, as a parent, a neighbor, a teacher, a school administrator. Early intervention funding will get a real fighting chance at passing on all levels – federal, state, and local if we raise awareness and bust this thing wide open. Thankfully, Jenny McCarthy has greatly helped in this area. I am still waiting for day-to-day changes in school.

THE NEW NORMAL

The new normal is mind boggling. The numbers are much higher in the younger years like this and taper off as you look at middle and high school.

A great stat from the American Acad of Peds states that 1 in 6 kids born today have a developmental disorder or developmental delay.

Here is what my son's typical playgroups and classes looked like through the years so far:

New Mommy Group 0-1 year old:10 kids in total (natch, they all didn't have a dx then):
2x Autism Spectrum Disorder
2 x ADD
2x Sensory Integration Disorder
1x Speech and fine motor delay. The child couldn't be understood by his peers until he was 5
years old, so it wasn't a redefinition of criteria.

Preschool: Class of 18 kids: my kid with Autism, 3 kids with a speech delay, 1 kid with sensory
integration, one kid with ADD.

Kindergarten: 20 kids total in typical classroom in a public school. 2 kids ASD, one kid ADD, 3 kids speech and OT delays. Again, the speech and OT delays affected their ability to be understood and do any projects. The teacher had been doing the "same ole" for 20 years, so it wasn't a change in criteria here anyway.

1st grade: 22 kids in total. One kid Autism, one kid Down Syndrome, 3 kids with a behavior plan, have IEP - unsure of an actual label, 2 kids speech, 1 kid OT, and 4 kids get pulled out ofclass for reading help 2 times a week(they are barely reading, criteria could be argued here?).

In total, in our little po dunk elementary school, 12% of all kids attending have an IEP. And this doesn't include the kids that we all know need one or had one previously.

2nd grade: 3 ASD kids including Leo confirmed, and 2 behavior plans. And interestingly, the parents of typicals think the para is there to help the teacher, when in fact she's dedicated to one child. Only a few know of the one special needs child (ASD). Leo and one other boy haveASD. No one knows about Leo, and a few know about the other boy, but not in this class.

3rd grade: Update: I can see one behavior plan, 1 ADHD with occasional para, 2 ASD kids, one being Leo, and another boy I recently figured out. One child with Tourettes.

Note: I've seen many presentations of P.A.N.D.A.S. across all grade levels in elementary school.

4th grade: 4 kids that have or had IEPs previously. Leo seems to be the only kid on the spectrum (although he doesn't technically meet the diagnostic criteria). More P.A.N.D.A.S. and Lyme in all grades.

5th grade: 5 kids with issues so far. Not sure what they are yet since we are still so new. One more P.A.N.D.A.S. kid, and one behavior plan, maybe O.D.D.?? A couple of medicated kids so far. Hey, it's early in the year.

6th grade: Don't have a good sense of how many kids with issues since this is big-time middle school!

7th grade: Block teacher has two IEP meetings during conference time. I can see lots of issues around school, but not sure of how many. I know many children are farmed out to other school locations that can't tolerate school without an aide. No one seems to have aides in middle school. However, all around me I meet parents that have kids with health problems or behavioral problems. I am not so new anymore so the terrain is getting clearer.

8th grade: Great year for Leo.  I see lots of high functioning kids with sensory issues and mood disorders.  Lots of anxiety and frustration going on in these overcrowded classrooms.  Several kids with gluten intolerance and allergies.  All dealt with with prescription drugs or avoidance.

Freshman: Really can't tell since, sadly, I am not at the high school helping out.  The kids I see at sports or at my home all seem fairly healthy.  There are a few autoimmune/immune kids for sure, but they don't seem to do any protocol other than prescription drugs.  Those are common.

*Ashley Morgan, parent of *Leo, age 15, recovered for almost 9 years. busterfoofoo@gmail.com
*These are alias names for protecting my son from discrimination