My Child Was Diagnosed With Autism. Now What?

diagnosed

If your child was recently diagnosed on the Autism Spectrum, you probably have a lot of questions.  Our family is not very far along in this journey, and I have to be honest – this was emotionally draining for me to write.  It brought me back to a place where I was confused and scared, because I didn’t really understand Autism.  I’m ashamed to admit I went through four of the five stages of grief.  Why am I ashamed?  Because I now realize that I was led to believe Autism is a tragedy.  It is NOT a tragedy.

I found these books so helpful!

I found these books so helpful!

You might have left the doctor’s office with more questions than answers.  In your hands are stacks of informative papers, FAQs, and therapy referrals.  What I really wish you had in your hands was a pamphlet of tips to find Autistic adults.  If you only take ONE thing away from reading this post, let it be this:  FIND AUTISTIC ADULTS.  Blogs and Facebook pages of actual Autistic adults have been THE BEST resource I have EVER encountered.  Take a break from hearing about Autism from doctors, parents, and therapists – go straight to the source.  If you want to get a better idea of what your child is experiencing, this is the way to do it.  I have personally contacted many of these individuals with questions and concerns, and they have always been welcoming and helpful.  (Please check out the links at the bottom.)

Ever since your precious child was born, you were learning how to be the best parent for them.  For some reason, that diagnosis makes you feel as if you suddenly know nothing.  I felt like everyone else was the expert.  I thought the doctors and therapists should be telling me what to do and how to do it.  This way of thinking was difficult to overcome in the beginning, when I thought everything I read was Autism gospel.  I had to remind myself:  No one knows my child better than me.  So before you jump on any Autism bandwagon, have an open mind.  Learn to trust your inner “mom voice”  (or dad voice).

I knew every wrinkle on that pensive little baby's head.

I knew every wrinkle on that little baby’s head.

Take the same approach when it comes to treatments and therapies.  You wouldn’t go with the first daycare or sitter you saw; you’d probably make sure it was a good fit for your child.  The same is true for therapists.  One day, a therapist yanked an iPad from my son (he was already playing with it), so she could reintroduce it as a “reward” after he ate some breakfast.  I started to cry.  I felt like he was disrespected as a person; as if it was dog training!  If it doesn’t feel right, it probably isn’t.  Just recently, my insurance referred us to a particular clinic, and it just didn’t feel like a good fit.  I did some research, found a different center that accepted my insurance, and switched!  Don’t feel bad if you don’t click with a therapist or teacher.  This is YOUR child.  Trust your gut.

Don't be afraid to create your own "therapies."  When we're upset, sometimes we "draw it out" in our house.

Don’t be afraid to create your own “therapies.” When we’re upset, sometimes we “draw it out” in our house.

Our picture chart showing two bites of food gets two skittles!

Our picture chart showing two bites of food gets two skittles!

Our picture explaining all the articles of clothes we MUST wear to play in the snow!

Instead of just telling our kids what they had to wear to play in the snow, we made it visual – a sort of “social story.”

This diagnosis means you might start Early Intervention through the school system and have frequent Individualized Education Progam (IEP) meetings. These are basically parent/teacher meetings to decide what supports your child needs and their goals.  Ask lots of questions.  Don’t be ashamed to say you don’t know what something means.  After one of our first IEP meetings, one of the teachers asked me if I had read “Welcome to Holland.”  I read it as soon as I left, and it spoke volumes to me.  It’s only a paragraph.  (Sidenote – After some research, I’ve found that this little paragraph can be polarizing…  Apparently, some special needs parents had it crammed down their throats multiple times or do not relate to it at all.  So take it with a grain of salt.  There are other versions out there called “Holland, Schmolland,” “Welcome To Beirut,” and “Welcome to Yellowknife,” but they’re a little too snarky for my taste.)  I, personally, find Welcome to Holland to be a positive outlook for anyone who has had any kind of expectations, and well… things changed.  I still read it every now and then.  It makes me cry – in a good way.

PicMonkey Collage

Our son’s unique perspective and attention to detail have given us an appreciation for things we might otherwise overlook. 🙂

 

 Here are some more resources I hope you find as valuable as I have:

Autism Discussion Page (Facebook)

Karla’s ASD Page (Facebook)

Mama Be Good (Facebook)

We Are Like Your Child

Special Needs Parents Best Advice

Do you have a special needs child?  What advice do you wish you could give yourself when you first started this journey?

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6 Responses to My Child Was Diagnosed With Autism. Now What?

  1. Amy January 9, 2014 at 8:32 pm #

    I’ve actually used that app!!! The older version. It was very interesting and it caught my kids attention!

  2. Amy January 9, 2014 at 8:30 pm #

    Thanks for sharing! And thanks for the kind words.

  3. Erin January 9, 2014 at 12:37 pm #

    I don’t have a child with Autism, but I do know someone who developed an app that is gaining a lot of positive recognition. It’s called Behavior Breakthroughs and it’s available through Apple iTunes for purchase. I’ve included the link if anyone might be interested 🙂

  4. Janet Nonna Ferraro January 8, 2014 at 9:36 am #

    A very emotional and powerful commentary. Hugely encouraging and comforting with wonderful resources. Your pictures are beautiful. They complement the article so well. It really helps to have visuals!
    I know this will be a blessing to many.
    I remember watching a children’s show years ago were the song at the end was Kid’s Are People Too. The only thing I can add to that is~
    No matter what. <3

  5. Christina January 8, 2014 at 8:06 am #

    Another amazing post Amy! I can definitely say that spending time with an autistic child has opened my mind to things that I would not have otherwise thought of. It has made me be more aware of and not judgemental of people in general. Not everyone is going to fit into the box that society has painted, autistic or not. Everyone has different ways to learn. We really need to hear more from autistic adults so that maybe in general we can all learn to be more open with different techniques in learning and many other daily things in our lives. Thank you so much for sharing your story, this was really eye opening.