The Issues that Divide Us

I have 2 teenage girl with autism.  My oldest Claudia has very limited language and severe behaviors.  She requires assistance with most everything.

My youngest Keira is verbal and has social and behavior issues.  Our life is not easy. Lately our family spends a lot of time divided.

Claudia has a lot of verbal stims (saying same word repeatedly) and some of these can trigger a meltdown in Keira. When this happens (usually with little warning) my husband takes Claudia for a ride or to go swing.

I generally spend an hour trying to calm Keira down and minimize damage.

So, in our effort to keep them both safe, we are divided often. And this is in our own home.

Sadly, the autism community is also divided.

Higher functioning versus Low functioning.

Moms versus Autistic adults who don’t feel we should talk for our kids.

The opposition to Autism Speaks or the use of the puzzle piece as a symbol to name a few.

Lately, I’ve seen some nasty exchanges on social media “support groups”. Groups meant to give autism parents a place to share information and vent about any issues that affect them.

A place where you reach out to not feel so alone.

It often takes a lot of courage to share intimate details of your life and really hurtful to feel attacked for it.  No one walks the same path on this journey.

Lately, it seems the biggest division is parents who do not feel autism is a gift.  The parents (like me) who would cure their kids autism in a second if the option ever presents.

I would cure it because it affects every aspect of their life.  And this world is cold and hard.

I would cure it because my beautiful innocent daughters are easy targets for abuse. Claudia because she could never tell us, and Keira because she desperately wants friends and to connect with other people.

They both blindly follow orders and have no sense of danger.

I would cure it because they will outlive us. And we have no family that will likely oversee they are cared for after we are gone.

We all do the best we can do give our kids the best possible life.  We do it because we want what all parents want.

Our kids to be happy and know they are loved.  Curing their autism wouldn’t change that.

After 14 years no one is going to tell me how to feel about this disorder.

I have spent countless hours learning all about autism. I live and breathe it everyday and it took me a long time to truly accept this life.

Sure, I have my opinions on all things autism:  vaccines, biomedical treatments, residential placements, etc. But I never want to push my views on anyone.

Especially a fellow autism mother clearly struggling and looking for a connection.

I don’t think the needs of parents of high functioning kids compare to that of parents living with severe non verbal autism. The very fact that my younger daughter can communicate her wants and feelings makes her life easier.

We have always had to guess Claudia’s feelings based on behavior. And pray we are right.

We can explain things to Keira and she asks questions.  Claudia cannot and it’s frustrating. And this frustration leads to behaviors and anxiety.

Really difficult behaviors. It’s often the needs of the more severe autistic community that are ignored.

The ones who require A LOT of assistance. The ones who will never be able to have any independence, engage in self injurious behavior (SIB), aggression towards others, etc.

The parents who deal with fecal smearing and teenagers in diapers. Or the parents that have multiple kids on the spectrum.

The parents who get no break.

The parents who are physically and mentally breaking down.

These are the parents who need a light shined on their lives.  And our support.

I think we can all agree that we need more awareness and acceptance.  More resources. More effective treatments. More advocates.

This is the fastest growing developmental disability.  There are more of us than ever.

We need to do better for our kids. All our kids. And do better by each other.

Personally, I am working everyday on getting our family back to where we were before these issues divided us.

I know for sure we are better together as a family. And we will get there.

Written by, Michelle Kiger

My name is Michelle Kiger. I’m a 42 year old stay at home mom of 2 daughters with autism, Claudia (14) and Keira (12). We live in NJ. My Claudia has limited language and many of the stereotypical “behaviors”. My Keira has the verbal and social skills of about a NT 6 year old. I have the rare opportunity to see the whole spectrum of autism on a daily basis.

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Comments

  • josephine

    April 12, 2019 at 3:24 pm
    Reply

    Michelle, Well said. I'd give my daughter that pill in a hot minute and we love her fiercely.

  • Josephine
    to josephine

    April 12, 2019 at 3:26 pm
    Reply

    *by pill I mean "cure"!

  • Frank White

    April 12, 2019 at 7:53 pm
    Reply

    Have a 47 year old autistic son. Now high functioning and lives in a semi assisted living situation. Over the years have heard a lot […] Read MoreHave a 47 year old autistic son. Now high functioning and lives in a semi assisted living situation. Over the years have heard a lot of negativity. What works for you, and your special needs kid(s), is what is right. Tune out the naysayers. If adversives work, use adversives intelligently (and with compassion). Autistic kids need discipline just as any kid needs discipline. Example: Our son decided to be potty trained after having his bottom cleaned with ice cubes for a few days. Harsh? We didn't start there but went in stages until we found something that works. Read Less

  • Carmen

    April 13, 2019 at 4:27 pm
    Reply

    I definitely completely agree with everything you wrote. I REEAAALLLLLLLYY wish that the Aspberger label had NOT been removed from the DSM. Severe non verbal […] Read MoreI definitely completely agree with everything you wrote. I REEAAALLLLLLLYY wish that the Aspberger label had NOT been removed from the DSM. Severe non verbal autism is not the same as a Aspberger Bill Gates type mind. Why are we putting them together and calling all of it “Autism”? It’s not!!! It’s clearly different. I don’t care which side gets the label but maybe one could be called : person born with extraordinary intelligence with no social skills. And the other group called: person born without speech or social skills and Delayed learning. Then we wouldn’t be lumping all the stuff together calling it “beautiful and different”. No. They’re totally different things in my opinion. And I should know I’m living it! Read Less

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