Autism Recovery – Hope for Caregivers of ASD Kids

According to the Centers for Disease Control and Prevention (CDC), 1 in 44 children by the age of eight are diagnosed with Autism Spectrum Disorder (ASD). What needs to be known is this: Almost 14% of the children that get Early Intervention make dramatic progress, some even recover.

The fastest-growing segment is considered High-Functioning, often meaning they can or will eventually function in regular classrooms, have typical friends, go to birthday parties and grocery stores with no significant issues.

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.

How Did this Miracle Happen?

Why is this the case now? Technology from the last few decades has brought all these children the chance for real progress and the unthinkable when we were kids, recovery.

Therapeutic intervention such as ABA have 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. Forty years ago, we only had Greenspan’s Floortime Therapy for all special needs kids.

Today there are countless therapies to address our individual children’s needs and the growing variety of disabilities 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? Other 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 get to that door, those hallways that we all remember as a kid. The sounds of a school. The smell of the cafeteria. The smell of those papers and books.

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

Because All Parents Discriminate

Parents keep the label a secret, if they can, 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.

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 is still being examined, 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 bite, and has a nice mom. As many as two out of five kids with ASD face bullying.

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, or do poorly in school.

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 – 14% 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.

All parents know is that they want to protect their kids. 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 is 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 guide 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. The new normal is here to stay.

There is no leadership. 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 plays a big role when districts try to accommodate special kids’ needs at their various schools. They must look at their population and their pool of therapists, equipment, space, etc, and lay it all out like a big puzzle.

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? And they aren’t even in my district!” they exclaim. This adds fuel to the discrimination fire.

Parents have no idea of the complexity in fulfilling a child’s modified education program – while minimizing costs at the same time. Bus routes, sibling separation, maximizing a child’s hours at school. Parents don’t realize that when they do see a special. ed child in their classroom, one of two things have occurred:

  • The child has very significant issues that the school could not avoid addressing.
  • The parents had to sue or fight like hell to get those services.

Because of the factors mentioned, schools don’t 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. 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. Don’t you think the benefits of sharing outweigh the cases where you leave the parents feeling depressed or inadequate?

Filled with unrealistic expectations? I certainly do. And as of today, 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. Isn’t it the parents’ responsibility, not individual providers or schools to filter ASD info? 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. Significance, 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. The Autism community must press for articles in general magazines 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 childrens’ 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.