Asperger's: To Tell or Not to Tell

After you get an Asperger's diagnosis for your child, you have to decide how and when to tell your child.  After that, you must decide who else to tell.  Of course, telling his teacher is usually a good idea, and most family and close friends should know.  But should you tell everyone else?  Should you tell people who may not be familiar with Asperger's or autism?

We aren't shy about my son's diagnosis.  We moved to a new area, and since he's been wearing the label for a few years, it just doesn't come up in conversation like it used to.  This is also a rural area where there are many stereotypes about autism.

Autism here means nonverbal or Rain Man.

Asperger's means brainiac who talks like a little professor.

People don't see the meltdowns and social problems associated with Asperger's, so they don't get it.

My kids were invited to vacation bible school at a new church.  We only knew one family, so no one knew about his diagnosis.  I did put it on his medical form because if there had been an accident or injury, the medical staff needed to know that in order to treat him.  I also made the decision that I would stay for the entire duration of VBS just in case.

My son doesn't like to talk to strangers because it is so uncomfortable for him.  Getting him to stand up in front of a crowd is next to impossible.

On the last night of VBS, the kids had a program for the parents.  Since the leader had no idea about his Asperger's or anxiety, he expected my son to get up there and speak his part.

He did it!

Since he was expected to be typical, he behaved as a typical child.

He started stimming, and I knew he was nervous.

But he did it!

Afterwards, I told the leader what an accomplishment that was, and I was so happy that he got him to stand up there and talk.

This is one time I am glad I didn't tell anyone about his diagnosis.  My son got pushed out of his comfort zone.

And he did it!

SPD Awareness Bracelets

SPD Connect is ordering more SPD Awareness bracelets.  You can preorder from them here.

They are orange and made from medical grade silicon, so they are safe for our little sensory seekers to chew on!

I am not affiliated with SPD Connect; I just like these bracelets!  I ordered 4 of them last year, and they have held up great!  My SPD boys love wearing them, and I have one for myself too.

I don't know how long the preorder lasts, so hurry if you want to be sure you'll get one.  I'm pretty sure they sold out the last time I ordered.

Chewy Jewelry and Toys for Sensory Seekers

One of my boys is a sensory seeker.  He chews on everything.  In school, he chews on his shirt or his pencil.  At home, he chews on small toys, pennies, and basically anything he can put in his mouth.

Since I can't get him to stop chewing, nor do I want to since that is how he regulates, I wanted to give him safe things to chew on.  I got him food safe tubing to chew on.  It is sturdy enough to chew on, and it is safe to put in his mouth.  This should not be used by little ones who can't tell you when there is a tear.  Do not leave a child unattended with this tubing.  I insect the tubing every time I give it to him to make sure it is still safe.

At school, he can't have tubing to chew on.  He doesn't like to self-regulate at school, so I got him a few things to help his day go a little easier and no one knows that he is seeking sensory input.



I love this necklace because he can wear a different design every day.  The lanyard breaks away easily so he won't get choked.




These are awesome because no one knows they are for his SPD.  They look like regular erasers, but he can chew on them all he wants.



These have knobs on them, so they provide more input than other styles.  My son uses these at home, and they are easy for little ones to hold.

I Love Your Asperger's

Yesterday, the boy and I were leaving his appointment, and I talked to the counselor for a few minutes. We were discussing his progress, and she said "the proof is in the pudding."

As we walked out, the boy looked at me with his big, brown eyes and asked where the pudding was. I hugged him and told him how much I love his Asperger's. Of course, he still didn't quite get where-- or what-- the pudding was, but he felt a little better.

As we were driving home, I got sentimental about the impending end of elementary school. He put his arm on my shoulder and reassured me that he would be OK in intermediate school. This physical contact was a big breakthrough, and one I didn't realize was even missing until it happened.

Yes, he will be OK in intermediate school and beyond. I love him, and, yes, I love his Asperger's.

Finding Help After An Autism Spectrum Diagnosis

The latest estimate from the CDC is that 1 in 88 children will be diagnosed as on the autism spectrum.  Even in the midst of an epidemic, many parents struggle to find treatment options for their children.  When my son was given his diagnosis, I spent weeks digging through the Internet and making phone calls to find help.

Resources and treatment options vary by area, but here are some tips to get you started on your search:

• Your pediatrician.  Surprisingly, many pediatricians are not aware of many treatment options available in your area.  Most children see specialists for their autism spectrum disorder, but your pediatrician may be able to recommend a few resources.
• Your local children's hospital.  I found the local children's hospital to be my most valuable resource.  That is where I chose to have my son evaluated, because I knew they have a highly respected autism research department.  The hospital, however, is an hour away, so it is not practical for weekly therapy appointments.  Even if your children's hospital is far away from you, their neurodevelopmental pediatricians or autism specialists will be able to help you find therapy centers in your area.
• Your school district.  The school district may be responsible for helping your child receive therapy services if the child is three years old or older.  Your school psychologist or principal will be able to tell you how to start the process to get your child evaluated for services through the school.
• Early intervention.  Early intervention is available in all states, but it may be called something else in your state.  Early intervention will evaluate your child and help you find therapy centers and other resources.
• Other parents.  The biggest resource I have found to help me find therapies and treatment has been other local moms.  I was about to find online groups specific to my state, and ask them for referrals and advice.
• Child psychologist.  Some children with Autism Spectrum Disorder also have comorbid conditions, and a psychologist or psychiatrist can help with social skills training and cognitive behavioral therapy.  

Diagnosis

We have an official diagnosis.

Even though I went to the first appointment armed with occupational therapy records, school records and his personal history, I didn't want to hear it.  I don't dispute the diagnosis, but I don't like hearing the a-word.

Asperger's Disorder.

Next year, it will just be autism.  Another a-word.

Now we start the doctors appointments and therapies that come with the diagnosis.  So far, so good, but we are only in week two.

It's no wonder moms of children with autism are showing signs of post-traumatic stress disorder.

Special Needs Binder

I have quite a thick special needs binder for my oldest, but it occurred to me last night that I don't have all the specialists phone numbers in one place.  In case of an emergency, my husband or mother would never be able to guess how many specialists we have appointments with or where to even begin!

I create this simple document in Google Docs so anyone can print it.  Just click the link here and print as many as you need.  Please share the document by pointing friends to this post.

If there's something I forgot, leave a comment.

Is anyone interested in pics of my binder and how I stay organized?  The doctors and nurses love that I have everything with me at every appointment, and it helps me when I need to find something.