Have you ever wondered what Autism might look like in Junior High, High School, or as an adult?
Walk through the years with families right here in Arizona as they share their experiences of what it was like for their child in these Ages and Stages of Autism:
Child Ages 0-3
Personal Story – By Ananí M. Vasquez about her son Benito, now age 6
As a veteran teacher with a graduate degree in Special Education, I felt I was fairly equipped to detect and deal with any learning issue that might affect my child. But I was wrong. No mom is ready to deal with their child’s diagnosis of autism. My son was diagnosed as moderate autistic 3 years ago at age 3 ½. I have learned and grown more during these last years than any other time in my life.
As a mother I have had to learn to ask for and accept help from others, and to take care of myself by scheduling time for rest, hobbies and fun. I’ve had to learn to do what is best for my family even if it goes against the mainstream.
In the years of research, reading and experimenting with autism interventions, I have come across a couple that have been invaluable. Understanding and treating Sensory Integration Disorder has had the biggest effect on my son’s behavior and ability to learn and connect to others. I have learned about the vestibular and proprioceptive senses, how important they are to everyday functioning and how they are related to the visual and auditory senses. Finding an Occupational Therapist that not only worked with my son, but taught me and trained me to do a sensory program at home was the biggest blessing.
I have also learned about digestive problems in the autistic population. I realized that our son’s abdominal pain, gas, constipation and inflammation in the small intestines were most likely caused by food intolerances. Enzymes, probiotics and changes in diet have helped immensely.
There are a few things I wish I had known before having my son. I wish I had fully understood the need for rest in my third trimester with pre-eclampsia. I wish I had had more support with breastfeeding in the hospital, especially with a baby under 6 pounds that fatigued easily. I wish I would have known that a child who can speak and who seems to be developing appropriately cognitively can still be on the spectrum. And that early intervention was available for a child like mine. I never thought he’d qualify for services because of his speech and intelligence.
Our biggest struggles were with anxiety, sensory issues, the need for routine and obsessive interests, which of course affected sleep, eating and digestion. Verbal stimming and staring into space often kept us from connecting with our son. I felt compelled to constantly structure as much of the environment as possible for him. His intense response to changes in routine or certain sensory stimuli would wear the whole family out. I was constantly praying for patience and understanding.
There have been many triumphs along the way. This past year he has been able to catch a large ball, buckle his seat belt on his own and just yesterday he snapped is own pants! The major triumphs have been getting his sensory systems regulated and having his functioning increase to the point that he no longer would qualify as moderate autistic.
Our focus now is on home schooling, social skills and finding activities that interest him and will give him opportunities to make friends. He’ll always be a quirky, creative, march-to-his-own-beat kind of guy, but we know there are other kids out there who will one day enjoy his special talents and intensity. One day soon we will be celebrating his first friendship.
Child ages 3-5
You have either had the diagnosis for a year or so or just receive one. Keep your eye on the big picture and do not get discouraged this early in the game. Each step you take will help your child improve and become healthier and happier.
Children ages three – five receive assistance through school-based programs or home based ABA (Applied Behavior Analysis) programs. As with early intervention, special education services are tailored to your child’s individual needs. The goal is to place kids in the least restrictive environment possible where they are still able to learn. If you’d like to pursue special education services, your local school system will first need to evaluate your child. Based on this assessment, an Individualized Education Plan (IEP) will be created. An IEP outlines the educational goals for your child for the school year. Additionally, it describes the special services or aids the school will provide your child in order to meet those goals.
In home ABA programs are designed by a BCBA (Board Certified Behavior Analysis) and consist of styles of teaching using series of trials to shape desired behavior or response. Skills are broken into small components and taught to child through a system of reinforcement.
Often children on the spectrum need Sensory Motor Processing. Make sure you work closely with your child’s occupational therapist to establish a sensory diet that is incorporated into all aspects of your child’s daily life. This will help other therapies and schooling as well as your family life.
Make time for your spouse and any siblings and take some time to do “normal” things. Communicate your feelings and seek support often. Do not try to slay the dragon alone.
Take care of yourself. Your health and well being need to be a priority. Eat well, get enough sleep and try to relax or meditate/pray often. Also, try to do one thing you used to do or love to do once or twice a month so you have an outlet and something to look forward to.
As a parent of a child on the spectrum, you should:
- Be involved in developing your child’s IEP from start to finish
- Disagree with the school system’s recommendations if you have concerns
- Seek an outside evaluation for your child if you deem necessary
- Invite anyone you want – from a relative to your child’s doctor – to be on the IEP team
- Request an IEP meeting at anytime if you feel your child’s needs are not being met
- Seek legal representation if you can’t come to an agreement with the school
- Be involved in all therapies, get parent training and participate in all programs and program direction
- Ask for baselines, short term and long term goals as well as monthly reports, quarterly reports and annual assessments
- Document behaviors and check to make sure causes are not possible medical or sensory issues
- Do not marry one program. If something isn’t working out and/or you or your child does not seem happy or you are not seeing success, follow your gut and change program
- Address diet, health and all medical conditions
- Seek out veterans who have been down the path before with many children and have had success
- Request help from parent mentors and fellow parents with kids on the spectrum with the similar parenting styles as you
- Follow the checklists and constantly seek a healthy and happy child
- Do research; attend meetings, workshops and conferences. Be an educated well informed participating parent
Child ages 5-11 (Elementary Years)
Child ages 11-14 (Junior High Years)
Child ages 14-18 (High School Years)
Child ages 18-21 (Young Adult Years)
My son celebrated his 21st birthday this year, and as any mother would, I thought of the many challenges he has faced, and those yet to come. He needs the occasional reminder to shave, as those sweet baby cheeks have been replaced with the beard of a man. He finds the increase of hair on his face and legs quite amusing, and he is proud he has mastered shaving without having a man around
He had his wisdom teeth removed in a hospital setting–and his anesthesiologist came and spoke to reassure him (and me). She said her nephew has Autism. The nurses turned down the lights, and explained every beep and procedure–a true blessing in such an anxious setting.
Obtaining legal guardianship was the smartest thing I have done, as I needed it to make his medical and legal decisions ( even though I am his mother).
He has graduated from high school. Hooray! No more IEP’s and endless negotiating, but there is also the challenge of filling the hours in a day in meaningful ways.
The job area he was trained at school, has suffered budget cuts and is not hiring. He had a choice, volunteer and get more experience, or try a different occupation. He chose to volunteer. He has a routine, friends, an ID card, and dress shirts. He is in his own community, which is a top priority as we look for job or volunteering opportunities.
Sam loves to paint. He can paint for 5-6 hours continually. We attend many community fairs and events to learn how to create opportunities to show and market his work. He will always have art; even when there are no jobs.
Music was a huge part of his high school experience. Today, we seek out opportunities to hear live music–free symphonies, new and upcoming bands, high school football games, etc..
Sam continues to receive hab and respite hours,(not all adults do), so we continue to have new goals and challenges to help him be a good brother, neighbor, friend, and citizen.
~ Renata Irving