My son has high functioning autism. He was diagnosed at 5 and a half, which nowadays, is considered a late diagnosis. He didn’t start showing any signs of something being on the autism spectrum until he was 3. His preschool tested him for Special Ed and came back with the results that he had an EXTREMELY high IQ and he was quite hyper. His pediatrician also suggested that he may have ADD or ADHD.
High Functioning Autism:
“He doesn’t look like he has autism.”
“He’s just a hyper boy.”
“It’s just a phase.”
“I thought kids with autism didn’t talk.”
It’s what you don’t see that can make it more difficult!
We never even considered autism, because he was so verbal, maybe even too verbal! He never lined things up or had to have things just right. He could look you in the eye and appeared to understand what you told him. He never toe walked or lashed out. We had never even heard of Asperger’s Syndrome or High Functioning Autism until he was 5.
Kindergarten did not start off well. He started throwing fits, which we now know are meltdowns. There were too many people, the lights were too bright, the bathroom was too noisy. He couldn’t concentrate and his meltdowns got worse. His FIRST school had no idea what to do with him. They were unprepared. They suggested testing and we agreed. The school did their assessment and we had our own medical evaluation done.
Starting the journey toward an ASD diagnosis
His initial diagnosis, from both sides, came back as Asperger’s Syndrome and as soon as we read up on it, it started to make sense! In the beginning, he was the poster child for Asperger’s Syndrome. Everything that I read about it, sounded just like my son and, at first, I felt relief because I finally knew what was going on. I finally had some answers.
He was sent to a different school, that had an autism program in place and again, at first, things were great! They understood him and they worked well with him. I was so relieved, until I started receiving daily phone calls. His meltdowns were escalating. He was spending less time in the mainstream class and more time in the ASD room.
We called it the “Jekyll and Hyde” Syndrome.
He began lashing out verbally. Screaming obscenities, screaming things like, “Don’t kill me!”, “Don’t hurt me!”, “Please help me, someone save me!”. The school, once again, couldn’t handle him and they would have me come to the school to diffuse his meltdowns or they would have me take him home.
He continued to lash out verbally throughout first and second grade. During second grade, his meltdowns got more violent and destructive. He would destroy classrooms. He would throw and kick things. He would also use his vocabulary to lash out and it finally came to a head when he screamed, “I should just kill myself!”. They called me on the phone, told me I should come get him and that I may want to take him to the hospital. I cried. How could my 7-year-old want to die? What would make him say that?! Is he really suicidal?! This was the day that I pulled him out of school and began to homeschool him.
Becoming an Unexpected Homeschooler
I couldn’t take the crying. I couldn’t the daily phone calls. The stress was always too much for me. He was so different at home. So, I unexpectedly homeschooled him for almost two years. Everyday was a challenge. It was in no way an easy thing to do and yes, it began to wear on me and I became aware of the fact that I needed help.
I called upon his old school and asked them to take him back, but some changes needed to be made to his IEP. They agreed to take him back for half-days at first and eventually, back to full day. I don’t think I failed by sending him back to public school. I think It was the best decision for both of us.
Back In Public School
His behaviors continued to escalate and his meds were constantly being changed. It was like being stuck on a carousel that continues to spin faster and faster, so there is no way off.
As he aged, he began to regress. He lost certain skills. His motor-function got worse and his maturity level regressed.
Currently, my son, with High Functioning Autism, is 13yrs old, the size of a 16yr old and has the maturity level of a 7yr old.
I have heard people say, “Oh, he has High Functioning Autism? That must be so much easier!“. No, it’s not. It a lot of ways, it’s harder.
Verbal or Non-Verbal: Communication skills are not there.
He has the verbal ability to tell you what is going on, but he doesn’t. He throws himself on the floor and screams like he is being murdered. His temper-tantrums and meltdowns are crazy, aggressive and scary.
He has the intelligence to figure out a way to manipulate the system to get what he wants, yet he doesn’t have the cognitive ability to change his behavior.
Imagine an 13yr old, that is the size of a 16yr old, lying on the floor, screaming and kicking like a 5yr old, while yelling, “Don’t beat me!” “Don’t kill me!” “Don’t hurt me!” “Help me, they are going to murder me!”.
Imagine an 13yr old, that cannot pick out his own clothes correctly. That cannot be left alone. That constantly says inappropriate things. That cannot use a button or zipper. That blurts out and talks to strangers.
Imagine an 13yr old, that is the size of a 16yr old, that screams like a 5yr old when he gets hurt, but uses a very adult vocabulary to express his unhappiness. That chews his finger nails so bad, that he has no fingernails left and that constantly has to have his fingers checked for infection. That is constantly covered in bruises, but can’t tell you where they came from.
Imagine an 13yr old, that acts like a 5yr old. That cannot be left alone with his sister at anytime. That requires constant cues, supervision and reminders. That requires special care, every single day. That has no impulse control. That does and says whatever he wants and never thinks of the consequences until after he has done or said it.
Imagine an 13yr old, that repeats the same behaviors over and over again and always expects a different result. That tries the same manipulation over and over again, and always expects it to work out in his favor.
Autism is not a cookie cutter disorder.
High Functioning Autism is not easier. Autism, in all shapes and forms, is never easier. You can never judge one autistic kid by another. They are as different as night and day and they do not fit into any cookie cutter or mold. One of these things is not like the other and it is every autistic child that I have met.
My child, with High Functioning Autism, is not a savant. Over the past 6 years, our dreams and hopes for him have changed immensely. We use to have such high hopes for him, but we no longer do. Now, we barely have any hopes for him at all.
We go through the daily motions and it gets harder and harder, for all of us, as a family. About 2 years ago, we figured that he would just live with us forever. Today, we are discussing therapeutic boarding school and residential homes.
With autism, there is no easier. It doesn’t matter where our children fall on the spectrum. My child with High Functioning Autism is no easier than any child on the spectrum, they require constant work.
This is our High Functioning Autism story. These are the symptoms of High Functioning Autism that you don’t get to see. What is your story?
I am also a contributor on TheMighty.com, which is an amazing recourse for EVERYONE! Autism included.