I only have neurotypical children. Why should I care about autism?
Because they will come in contact with an autistic child. I can guarantee that. More than half of all children with autism are bullied in their lives. They are also bullied at a rate of twice as often as their neurotypical peers. But, more than half of the bullying the does occur is stopped when a peer does intervene to show autism awareness and autism acceptance. Remember the statistic about suicidal thoughts? Think about that in terms of bullying and it becomes quite scary.
Teach your children about autism so that they understand and accept it. Together, everyone can lessen the bullying that does occur. Together, everyone can help bring awareness and acceptance.
(Plus One Note – Your kids will grow up, and they will work with autistic adults. Teach them young.)
How do you answer the questions about favoritism between non-autistic kids and autistic kids?
Bubba feels jealous sometimes of Smash-N-Break. For example, since our local school district cannot see the difference between a hat and an asshole, they currently have their heads shoved up an asshole and are preventing Smash-N-Break from access to a free and appropriate public education. So, until such a time as we can help him, I will homeschool him when he isn’t in ABA therapy. Bubba sees that I will have two days a week of Smash-N-Break and Mommy time.
I’ve been honest. Bubba likes school. School gives him opportunities that Smash-N-Break won’t have. Field trips with friends, music programs in front of the parents, book fairs, holiday shops – all of that Smash-N-Break won’t have access to. Team sports? Smash-N-Break doesn’t have the same access. Between therapy schedules and the fact that he will be homeschooled, it’s physically impossible for us. The homeschool teams are all older and an hour drive away. Plus, whereas Bubba gets Mom, Smash-N-Break will have Mom, Teacher Mom, Therapy Mom, and Who-Knows-What-Else Mom. He won’t be home playing. He will be working. We will have two days a week to fit in what Bubba did in five. I’ve told Bubba he isn’t wrong to feel that way, but that I don’t favor Smash-N-Break. Right now, Smash-N-Break has needed more of me than Bubba. That will change as everyone grows up. Fair doesn’t mean equal. Open and honest communication is needed.
We have a diagnosis. Now what?
Feel your feelings. Grieve the loss of the neurotypical child you had thought you had. It’s normal. Find support groups. Build a team that will communicate. Be the best advocate for your child. Be ready to fight for every inch of support he is supposed to have (like an IEP). Start researching. Be supportive. Be understanding. Realize you probably know someone going through the same thing, even if you don’t think you do.
There is no right or wrong way to start the process of getting services. Sometimes, going through your school district is best. Sometimes, doing it privately while you fight for what your child needs is necessary. The first thing is to call your insurance and see what is covered, what isn’t covered, costs, co-pays, deductibles. Talk to your pediatrician and the people who diagnosed as to what they recommend. Start researching options. Look into grants if funds are an issue. Look into programs that could help. Look into products that may help (like we did with the AngelSense).
See if you can find a convention or group to start to learn who the different providers are in your area. Schedule appointments to meet and see if you think they’ll be a good fit. Build a support network. This doesn’t need to be major. Our families are 1,000 miles away. So, we make friends. We have monthly get-togethers with neighbors to play games. We have a babysitter or two for the occasional times we can leave the kids.
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.
So, if I have concerns, when should I have my child evaluated?
As soon as possible. Signs can show up as early as 6 months. All parents do the M-CHAT questionnaire at the 18 month checkup. Still, even with these early items, the average age of diagnosis is 4 years old. Like I’ve said, the earlier the better. Early intervention is key to future successes.
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.
Didn’t you just not discipline enough? This is a parenting problem, isn’t it?
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?
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!
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 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.