Blog Archive

This post contains links to products on Amazon. If you purchase items through these links, I receive a small percentage of every sale.

It's Time to Have a Serious Talk About the Realities of Autism

It seems that autism has become a hot topic as of late.

There are sides and you MUST choose which side you're on.

People argue and are offended easily.

It seems that no matter who you are and what you do, your attempts to do what's right when autism is concerned will be met with criticism from at least one person.

As much as I've wanted to avoid this, it's time to have a serious talk about the realities of autism.

It's time to have a serious talk about the realities of autism

Over the last six months I have experienced first hand the criticism that has come as I've shared my views about autism.

I guess in some ways I should be excited about this.  There was a time when no one understood autism.

Now the diagnosis is commonplace.  

Every "expert" has an opinion on the "right" way to do things. 

Every caregiver of a child with autism has found what works for them and doesn't hesitate to share that knowledge with others.

For the first time so many who were diagnosed as children are sharing their experiences as adults.  With those first hand accounts has come so much information.

Then there are those who are now aware of what autism is and are seeking out diagnoses as adults.

With all that's going on in regards to autism, I find it time to define exactly where our family stands on these issues and how we will be moving forward with discussions on the blog.

Autistic or a Person with Autism

Four people in our home have been diagnosed with Autism Spectrum Disorder.  

My husband, who was diagnosed as an adult, prefers to be called a person with autism on the rare occasion that the topic of his diagnosis comes up in conversation.  If the topic doesn't come up, he prefers Jason, as he is not just a diagnosis, but so much more.

My three children, Dinomite, Bulldozer, and Sunshine prefer to be called autistic.  They choose when they'd like to bring up the diagnosis in conversation, unless a situation requires it. If a situation requires the mention of it, I always ask them first if it's okay to share. 

Jason, Dinomite, Bulldozer and Sunshine are the ones who have been diagnosed with Autism Spectrum Disorder.  I respect their varying language preferences when I am with them.

In my writing I use both language forms out of respect for each member of my family.  These language uses will continue to be used interchangeably.  

If I am around someone else with the diagnosis, I will always ask their preference.

Our family's opinion is that how you address a person diagnosed with autism spectrum disorder should always be based on what the person with the diagnosis prefers.  

When in doubt ask!

Every person is different.

Neurodiverse or Special Needs

Neurodiverse is yet another term used by the autistic community.  

Neurodiversity is defined by dictionary.com as:

"The variation and differences in neurological structure and function that exist among human beings, especially when viewed as being normal and natural rather than pathological; recognizing autism as an example of neurodiversity."

Our family supports and promotes the use of this terminology when referring to the autistic community, however no one in our home prefers being called neurodiverse over being called autistic or one with autism.

My children are proud of their autism and see no reason to call it anything else but what it is.

My husband feels the word neurodiverse is just too long.

We don't use this term in our home and probably won't use it very much when writing either.

Special needs is a popular term in our world today but seems to rub those diagnosed with autism spectrum disorder the wrong way.  They often feel that it is a negative term.

When I am referring to all four or my children or family in general I use the term special needs. Between the six of us we have multiple diagnoses that do not just fall into the category of neurodiversity or autism.

This term in no way is meant to be derogatory.  The only reason I use the term special needs it is that I can't think of another reference that encompasses all of the diagnoses our family has.  And there are a lot of diagnoses.

With that said, I feel that everyone has something.  We just don't know that because people are afraid to talk about it.

I believe we all have special needs.  

This is what makes us all unique and original.

There is no shame in needing accommodations to be the best we can possibly be.  

Everybody's brains and bodies work differently.  

Individual accommodations should be the norm, not the exception.

Special needs is not a bad word in our home because everyone has them and is proud of them.

Special needs will continue to be my go to term as I speak and write about our family experiences. This will also be true when speaking about a child with multiple diagnoses.

Autism Awareness or Autism Acceptance

Long gone are the days when the majority of the population doesn't know what autism is.  Most people know someone who has been diagnosed with autism spectrum disorder.

The unfortunate thing is that autism receives far more negative attention than positive.

That's where things need to change.

Accepting autism isn't enough, especially when it means that certain organizations promote finding a cure and fixing what they think is broken, with no respect for the individual diagnosed.

Talking about the diagnostic criteria of autism and wearing blue one month a year doesn't do anything for the autistic person looking for a friend or a job to support their family.

Before you do choose to wear blue or promote the puzzle piece symbol, please look into what these things mean and how the autistic community views them.

Autism Awareness has long been an expired term and is considered offensive by the autistic community.  

They want to be accepted.

They want to feel loved.

They want to be celebrated for how amazing and wonderful they are because of their diagnosis, not despite it.

This is also how our family feels.

When our boys were diagnosed years ago, my husband spoke so profoundly,


"Instead of making them work for the world, let's make the world work for them."

This has been our family motto for years now and I feel it encompasses the acceptance and celebration that autism deserves.

We do not wear blue or celebrate autism awareness.

We do not celebrate organizations that look for a cure.  

We do not support the puzzle piece symbol.

We will wear #redinstead or any other color or pattern to support our love and acceptance of autism.

We will enjoy celebrating neurodiversity and autism acceptance.

We will show off how amazingly awesome and unique the autistic people in our life are by bragging about their accomplishments, passions, and brilliance.

Both positive and negative experiences regarding our family's opinions and experiences will be shared on the blog.

ABA or No ABA

ABA stands for Applied Behavioral Analysis.  It is a behavioral therapy used to change undesired behaviors of those with autism.  When a young child is first diagnosed it is not uncommon for a doctor to recommend this therapy for up to 40 hours a week.

When Jason and I were first introduced to the world of autism (when our boys were diagnosed) we sought out any and all helpful resources that could help us understand our boys and help them be the best that they could be.

Dinomite and Bulldozer received occupational therapy.  Bulldozer also received speech and physical therapy.

Jason and I took parenting courses offered by the hospital where our children were diagnosed.  Through these courses we learned several types of behavioral techniques one of which was ABA.

Our boys attended a private special needs preschool.  Dinomite was in an inclusive classroom.  Bulldozer was placed in the autism classroom.  The school recommended that we meet with an ABA specialist at home to help Bulldozer.

At that point, I already had my own opinions about ABA. It was my least favorite behavioral approach. I couldn't get over treating my child like a dog.  

But we met with the woman because it was recommended and we wanted to do ALL we could to help our kiddos.

It only took two meetings to realize this was NOT for us.  We disagreed with the method entirely and felt it harmful to our children.

With that said, I want to make it perfectly clear that we do believe in analyzing behaviors.  We've found that analyzing and understanding our children's behaviors helps so much in helping them be the best they can be.

When we better understand our children's responses to the world around them we can help them feel safe and provide the sensory input they need.  Once we can do those two things we can help them learn how to communicate their needs and then meet them.

It's the approach to changing the behaviors that we heavily disagree with when it comes to ABA.  Some autistic adults who have gone through ABA therapy call it downright abusive.

One of my biggest pet peeves about ABA is that it in my opinion, it in no way helps an autistic child mature to an independent adult.  

A child needs to find their own internal motivation to become the best they can be.  They need to learn that they are loved and okay just the way they are, with no need to change themselves to be accepted. By following the child's lead we can help them become successful and independent.

ABA tends to be the opposite approach.

Now fast forward a few years to Sunshine.  One of the recommended therapies for Sunshine after her psych ward inpatient stay last summer was home based ABA therapy.  It only took two meetings before I asked the therapist not to return.  

However, at her day program, Sunshine is placed in an autism ABA focused classroom.  The principal felt that this classroom would be the best fit for her as opposed to other classrooms where children only had behavioral issues due to trauma and mental illness.  We supported this decision.

There are times when there is no perfect solution and you must choose what's best in the moment for everyone involved.

We are very thankful that Sunshine has fantastic teachers who listen and communicate with us about behaviors and approaches they use in class.  They never stick to one behavioral approach for too long so that has helped us feel more comfortable with the arrangement.

Sunshine's teachers have learned that she is very inconsistent from day to day in her functioning and the ABA approach does not always work.  

At home, Sunshine knows we do not use an ABA approach.

Our in-home mental health therapist was very supportive of this decision as she spent several hours in our home each week observing and working with Sunshine for several months last year.  

So, am I for ABA?  No.  Does our family utilize the service? Yes.  

ABA focused programs are those receiving funding right now.  Sunshine's day program is one of those programs.  

It is extremely unfortunate that more sensory based programs are unable to receive desperately needed funding, as this type of setting would be our preferred scenario.

But when faced with the choice between an autism ABA focused program or a residential treatment facility due to aggressive and unsafe behaviors, we chose the option that allowed Sunshine to be at home with her family for as long as possible.

Autism: Positive or Negative

As you can see, our views about autism are not always black and white.  We have our personal opinions and advocate for them as best we can.

When our children were diagnosed, I grieved.  The grief came from a negative conotation with the word autism that I had been taught.  I had a lack of understanding of how amazing my world would become because of autism.

I felt despair and sorrow about my children's behaviors before and right after diagnosis.  My husband and I did not know how to help them and were overwhelmed by all of the advice from therapists and professionals.

It wasn't until I let go of what "should" be happening and what I "should" be doing that I found joy and happiness.

Autism is not bad.

Our family loves and supports the autistic community and have no desire to change anyone.

One of my sisters works at a hospital evaluating children and adults in mental health emergencies, advocating for their rights.  

My other sister is a special education teacher and trained in ABA.  Before that she spent years as a one-to-one aid.  

Sunshine's grandmother is a speech pathologist and works in a day program just like the one Sunshine attends helping autistic children communicate in as many ways as they can.

My autistic husband and I are happily married and are raising four special needs children, three of whom have autism.  

During the school year we teach other children who are neurodiverse.

Yes, life with autism is hard sometimes.

But life is also hard without autism sometimes.  

Everyone has their own personal challenges.  

I'm not autistic and I struggle with some things far more than my husband does.  

Perspective is everything.

So many of my husband's "quirks" are reasons I fell in love with him and why I still love him.  He is magnificient.

I can't imagine life with a neurotypical child.  I wouldn't know what to do with myself.  It would be so boring and absent of so much joy and learning.  

My autistic children are amazing and teach me so many new things each and every day.

So please know I will stand up for and advocate for the autistic community any time the ocassion arises.  

Their strengths and weaknesses may be different than those who are neurotypical, but we all have strengths and weaknesses.

I certainly wouldn't appreciate so much effort and focus being spent to correct things others think are wrong with me, as has happend with those who have autism.

Let's change or focus to positive!

If you enjoyed this post, you may also enjoy the resources below.
I Think My Husband Has Autism Sensory resources for children who need to chew Preparing for an appointment with a developmental pediatrician


It's Time to Have A Serious Talk About the Realities of Autism

No comments:

Post a Comment