Process For Getting An Autism Diagnosis

If you’ve been a regular reader of my blog then you know that Autism was never on my radar.
I knew something was going on with my oldest but I wasn’t exactly sure what it could be, and that is what prompted me to seek out a diagnosis. I’m speaking from the point of view raising a child over the age of five and holds the high functioning Autism diagnosis aka Aspergers.

I’ve told this story before so I won’t repeat it all but you can read it here.

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What I wanted to talk about today is the process you’ll go through in getting the Autism diagnosis.
If you’re like me Autism was the furthest thing from your mind, or maybe you did some research and it popped up online or was hinted at by friends and family, or your doctor brought the symptoms to your attention.
Maybe you have a friend who has a child on the spectrum and after hearing her story you thought it sounded very similar to your child.

Several Characteristics of Autism:

Sensory Challenges:
sensitive to foods, textures, lights, loud sounds, big/crowded places.
a sensory seeker – enjoys heavy-duty activities, running, jumping, riding a bike, playing in the mud, lots of water play – the beach, pool, bath/shower, mixing, stirring, pushing, pulling, lifting, tight hugs.
clothes have to fit a certain way, usually very soft(think 100% cotton)
shoes must fit tight.

OR

You could have a sensory avoider:
does not like messy play, no hugs, arm rubs, doesn’t care to be touched.
must wash hands immediately after anything gets on them.
also needs clothes and shoes to feel and fit a certain way, foods have to be a certain texture.

Anxiety: 
Two years ago it was sharks and now it’s weather patterns.
We live near the beach and she loves learning about the weather and we do not leave the library without a weather book. Her worry at the moment is if we’ll have a hurricane or tsunami.
She can tell you the how, where, and why one would start, and knows the procedures for staying safe in either situation.

A child on the spectrum could have anxiety over many things.
Anxiety over clothing, schedules, food, leaving the family pet, siblings, dreams, traffic.

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Intense Interests:
only talking about or interested in one or two specific topics.
plants, animals, weather, bugs, dolls, a certain game.

Trouble communicating and reading social cues:
can only follow one or two-step instructions. but can tell you every detail about his/her interest.
can be highly social but has a hard time reading cues from friends who have had enough of their play, hugging, etc.
has little or no friends, trouble making and keeping friends.
may not understand sarcasm and jokes – takes everything literally.
doesn’t understand appropriate behaviors.
walks off in the middle of your sentence or changes the subject.
can have a hard time with back and forth conversation
walking off or running away
processing delay with speech/understanding what others are saying or asking of them.

Little or no eye contact/interest in other people
your child may look at your forehead instead of in your eyes.

Stimming:
repetitive movements: spinning, hand-flapping, jumping,pacing, twirling your hair, rocking, etc.
repetitive words or phrases
this goes back to Sensory Challenges…they’re seeking some kind of sensory input, it’s actually a form of self-soothing.

Some kids have more or less of these characteristics and they can manifest in different ways.
People always ask how do you know it’s not “typical childhood behavior?”
Couldn’t they outgrow most of this stuff? Absolutely!
You know your child better than anyone. There’s usually a nagging feeling that something is going on.
Take into account your child’s age and maturity level. Go with your gut.

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I highly suggest finding a doctor who is an Autism specialist.
This is what they do. They study and help people all over the spectrum and can tell after a few appointments and probably a few moments with your child. You can see more symptoms here and this list for high functioning here.

There is a lot of paperwork.

Don’t let that discourage you. You’re going to be asked about all of your childs quirks, and I think the hardest part is constantly going over all of the things your child can’t do.
For a time the entire focus is on all of the things that are “wrong” with your child and that hurts.
The entire process of getting the Autism diagnosis can take months or years.
Ours took almost two years because after the initial diagnosis I decided to wait on the heavy-duty neurological testing.
I didn’t think she was in a place to handle it all at 8yrs old. I had the diagnosis and in the year and half before doing the full workup, I started doing a ton of research. I worked on how I asked her questions, understanding how her brain works, slowing down our life when needed. I built a support network for myself.

We started the full workup in September 2014 and completed everything in Jan/Feb 2015.
For almost every appointment and every test there was a packet to fill out.
They would do the test and if we didn’t go over the results that day, I would come back in to go over them.
The staff was always kind and respectful. They answered all my questions and listened to my concerns.
They gave me tissues and hugs when I cried, recommended therapies and made notes of all that we were already doing.

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I’m being honest with you when I say the process is hard. It’s going to take a toll on you mentally and emotionally.
You’re going to need a safe place to vent, ask questions, or to simply talk it all out.
You might have someone in your ear telling you how wrong it is to label your child, or saying they’ll grow out of it and you’re just being dramatic. Someone may tell you it’s all in your head. Do yourself and your child a favor and shut them out.
You could tell them you would be happy to direct them to articles or give them paperwork on the subject as long as they are willing to keep an open mind and be respectful.

I can’t think of any cons to having the diagnosis. It’s been a blessing and a relief!
I always explained to my daughter what each test would entail and why we were doing it.
She still doesn’t know she holds an official Autism Diagnosis, maybe in another year or two we’ll have that discussion.
For now all she needs to know is that her brain works differently and there’s nothing wrong with that.
I wanted to understand her better and be able to help her without getting frustrated and the Dr’s helped us with that.

Whether you’re in the beginning stages, thinking about starting the process, or in the midst of getting the diagnosis, I want you to know – you will all be ok. It’s overwhelming, confusing, and heartbreaking at times, but you will get through it.

This series on Autism will run for the next several weeks.
I have a list of topics, but if you have a specific question, please don’t hesitate to ask!

process for getting an autism diagnosis

p.s. the photos are completely unrelated to this post….I thought a little eye candy would be a nice way to break up all the words.

p.p.s.
this series is not meant to replace your medical professional. i am speaking from my personal experience and want to help other parents and children who may be going through the same thing.

You can read the entire Autism Series by following the links below:

Occupational Therapy Changed Our Life.

Siblings and Autism.

Unschooling and Autism.

Seeing The Beauty In Autism.