What’s a Parent to Do?

I get it.

They aren’t cute.

They aren’t cuddly.

They can be rude, obnoxious, loud and very irritating. Not a picture of what makes people want to donate their hard earned money.

So it seems natural that organizations are designed to help autistic individuals focus on children – young children are cute and they tug at every parent’s heartstrings.

But children grow up.

Unfortunately the need for services doesn’t stop at 18 or 21.

Parents of any special need child know this – yet we are routinely ignored in the media, on Capital Hill and even by the autism industry itself.

What is a parent to do?

Keep showing up.

I know it doesn’t sound like much, but it is true.

• Keep advocating through local social services.
• Keep trying new therapies.
• Keep talking about your struggles and your triumphs.
• Keep moving, even when it is backwards.

Things change over time. Sometimes the change is so slow that we don’t even recognize that it has happened.

Look back 10 years.

Most people had never heard about autism, or knew what it was.

Today there is an entire month devoted to autism awareness during which major news outlets, local papers and even television programs frequently air something.

The media is paying attention – if only once a year.

Today there are weighted blankets, no tie shoelaces, chewies and noise cancelling headphones available for anyone who needs them.

There are apps to help non-verbal individuals communicate.

There are special schools, special teachers and special parents out there working every day to help.

Progress has been made for our kids.

But our kids grow up.

It is time to start creating our own solutions. We can’t wait for an organization or government law or anything else. We need to do it ourselves.

Start today.

Join a Facebook group with other parents – there are several focused on teens and adults. But go one step further – share some of the meme’s or stories you find on these sites on your own timeline and ask others to pass them along. The more mainstream exposure we can get, the better.

Get involved, and even more importantly, get your child involved too. Participate in walks to raise money, write a blog, volunteer at local autism organizations or promote businesses that support autistic employment.

Help each other. You are not alone, but so many families feel that way, particularly once their child moves into high school and beyond. The support seems to dry up.

It doesn’t have to be much, just sharing an idea that worked for you:

• The mother who bought a house with a mother-in-law suite and moved her autistic child into it.
• The teen who has their own website to share information about their favorite subject – cooking.
• The autistic adults who are sharing the strategies that worked for them as teens and young adults. (And making money at it too.)
• The process that helped an adult get through the interview and get the job.
• The tip that helped your child become more social, on their terms

Anything that has worked for you for a specific issue or problem can be something that might work for another family.

It is time to create a shift in the autism community.

#Nothing For Us Without Us is more than just a Twitter tag. It should be a way of life.

Autistic individuals are no longer just children who don’t have a voice. They are teens and adults who are capable of sharing with others what they need.

Let’s start listening.