Who To Call For An ASD Evaluation – AAM Day 22

Who do I call for an evaluation?

Start with your pediatrician.  Some will refer you to the Children’s Hospital in your area.  Some will refer you to a developmental pediatrician.  Some will refer you to a psychiatrist or neuropsychologist.  Some will say to just go to your school district.  I will say this – an educational assessment indicating autism will not be enough to cover your child medically.  Once they age out of services that the school system can and will provide, you will still need a medical diagnosis to get therapies.  I will also say that we are currently struggling with our school district.  They are claiming that he has a medical diagnosis, but it isn’t sufficient for an educational diagnosis.  I don’t understand this, because his issues don’t disappear just because he is at school.  Liken it to a broken leg – you don’t have a broken leg just at home, but school magically makes it better.

For us, Smash-N-Break went through the ADOS-II testing, among other things.  The ADOS is the standard used for diagnostic purposes [https://research.agre.org/program/aboutados.cfm].  There is no blood test or medical test currently to diagnose.  There is research in this area that is promising, but it isn’t finished or formalized yet.  He had a full and complete psychological evaluation, that included an intelligence portion.

Whats The Outlook For Autistic Adults | AAM Day 20

Be honest, what is the outlook for Smash-N-Break as an adult?

Early intervention is key.  While we are on the “later” side of early intervention at 5, he is still obtaining early intervention.  Early intervention can help set up kids for success in the future.  That being said, the statistics aren’t great.

Suicidal thoughts are 10 times more likely in individuals with autism.  The most common cause of death of an autistic child is drowning.  Remember, they wander.  Open water is a risk.  Ninety percent (90%!!!!) of adults with autism are underemployed or unemployed.  Thirty-five percent of young adults (aged 19 to 23) with autism have not held a job or received post-graduate education after leaving high-school.  In 2013, it was estimated that only 17% of individuals aged 21 to 23 had lived independently at that point.

But it isn’t hopeless.  Understanding and acceptance is the start.  Early intervention and access for all to the needed therapies is crucial.  Colleges are even recognizing the issues, now, and starting to set up a system for autistic individuals to have a mentor to help them adjust to college life without an IEP (individualized educational program).  The recent Supreme Court ruling will also help children with autism do more than sit in a classroom and improve slightly.  It will hold them to their peers intellectual growth and push for more.

Stay tune for our last post of the month for more about this.

Its Just Your Parenting Isn’t It? – Autism Awareness Day 18

Didn’t you just not discipline enough?  This is a parenting problem, isn’t it?

NO!

No amount of talking, yelling, screaming, spanking, or punishments would make Smash-N-Break understand the “who, what, where, when, why” questions that need answered when unexpected behaviors happen. This is a verbal deficit of his.  He has an expressive and receptive fluency disorder. He CAN and IS overcoming this, but it takes time, patience, and therapy.  This is a development disorder of the brain.  His brain is wired differently than your brain.

If you continue to suggest that I can spank the autism out of him, you are volunteering to see if I can spank the ignorance out of you.**

**This is not directed towards anyone I personally know.  Just in general.

What is ABA Therapy? Autism Awareness Day 15

What is ABA therapy?

I’ve talked about ABA therapy before for Smash-N-Break.  ABA therapy is widely held to be the most effective behavioral therapy for individuals with autism.  We have seen a fantastic response from Smash-N-Break with his ABA therapy.

ABA stands for Applied Behavior Analysis.  Smash-N-Break has a therapist that he works one-to-one with.  She (it’s typically female for us) systematically applies interventions using learning theories to help him with his social, communication, and behavioral deficits.  The whole goal is to work themselves out of a job.  It’s positive reinforcement to bring about positive changes in behavior.

Some people don’t believe in ABA.  They view it as changing the child too much.  I respect their opinion.  We did our research, and listened to individuals who knew it would be beneficial.  We’ve seen positives.  I understand that it isn’t always the case.

 

*This one got stuck in the queue. Sorry folks!

How Do I Explain Autism To My Kids? – AAM Day 17

We have a friend who has autism.  How can I explain autism to my children?

Autism is complex to explain to children.  There are many great programs to show children what autism is.  Sesame Street just introduced Julia, a character with autism.  Arthur has a special episode all about Carl , a child with Asperger’s (which is under the ASD label).  The new Power Rangers movie has an autistic character.  Many people believe Drax from Guardians of the Galaxy was written with an autistic individual in mind.

There are many many books about autism and children.  Some are for explaining autism. Some are to show how friendships where one party has autism work.  The message of all is the same – understanding and acceptance.

What Other Therapies Do Autistic People Get? AAM Day 16

What other therapies do people need or get?

Speech therapy is common.  Remember, there is a verbal deficit for children with autism.  Occupational therapy, too, to help with sensory integration.  Horseback riding is said to be incredible therapy for autistic children.  Social skill groups are also available.  Cognitive behavioral therapy is helpful.  Music therapy, massage therapy, sleep education and training, feeding therapy are all other examples.  For adults, marriage counseling and cognitive behavioral therapy are very important.

Not every person with autism will need all of these therapies.  Each person will have their own therapies suggested and prescribed by their medical team.

What is ABA Therapy? Autism Awareness Day 15

What is ABA therapy?

ABA stands for Applied Behavior Analysis.  ABA therapy is widely held to be the most effective behavioral therapy for individuals with autism.   It’s positive reinforcement to bring about positive changes in behavior.

I’ve talked about ABA therapy before for Smash-N-Break.  Smash-N-Break has a therapist that he works one-to-one with.  She (it’s typically female for us) systematically applies interventions using learning theories to help him with his social, communication, and behavioral deficits.  The whole goal is to work themselves out of a job. We have seen a fantastic response from Smash-N-Break with his ABA therapy.

Some people don’t believe in ABA.  They view it as changing the child too much.  I respect their opinion.  We did our research, and listened to individuals who knew it would be beneficial.  We’ve seen positives.  I understand that it isn’t always the case.

How Much Does Autism Cost A Family? AAM Day 14

How much does autism cost a family?

Autism is expensive, it is estimated to cost a family $60,000 a year.

Now, the family does not pay all of that, obviously.  Lots of therapy costs can be covered by insurance.  But it is still a direct hit to the financial side of a family.  There is gas to get the child to therapies, childcare for other children, medical appointments with specialists, alarms and GPS units, you name it.  There are grants available.

Further, obtaining coverage for what is considered the most effective therapy is not easy.  ABA therapy (I will discuss this tomorrow) is not always covered.  Some states have mandates that ABA therapy needs to be covered by fully-funded plans.  This is government plans, Obamacare plans.  That doesn’t mean copays or deductibles are low.  But, many people are on self-funded plans (employer-provided plans).  These plans are exempt from the mandate.  The levels to qualify for Medicaid are extremely low – it is for people below the poverty level.  So, children miss out.

Our example of ABA therapy.  We have insurance coverage that covers quite a bit of it.  Without insurance, it would be $1,000 for a full 8 hour day.  Most children need a few days a week minimum.  Some need 5 days a week.  If your employer doesn’t provide the coverage, and you make too much for the government-funded insurance, your options become quite limited to help your child.

Is Autism Scary? Autism Awareness Day 13

Are there scary sides of autism?

Yes.  The diagnosis and the unknown is scary enough on it’s own.  There are other sides, too.  One is wandering.  Wandering is a scary side of autism.  About 50% of individuals with autism wander away from home.  Of those who do wander, drowning is a common result.  Families with wandering autistic children do many things to keep their children safe (ourselves included).  We use an alarm system, doors locked, door chirps, and a GPS unit (AngelSense) on Smash-N-Break.  He’s left home in the middle of the night more than once.  He’s wandered away from his school once.  I could see where he was.  I could hear his teacher get to him, and bring him back to safety.  It’s a big relief to know I can track my child when he isn’t with me, since he is prone to wandering.