Learning to Be More Open to What My Son on the Autism Spectrum Really Needs

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Twelve years ago this month, I walked into our pediatrician’s office with my then-17-month-old son in tow, hoping for a prescription for reflux. I walked out shaking, crushed by our doctor’s callousness, and clutching four mis-stapled and badly copied articles about autism in my trembling hands. Our pediatrician never uttered the word himself, just told me to call a developmental pediatrician, thrust some numbers on a stickie into my hand and left the room.

He wasn’t our pediatrician much longer.

I remember being in shock as I left the office, as we’d just been in four weeks prior and our insensitive doctor had not seemed that concerned with the delays our toddler was demonstrating. I also remember as I made my way to the pharmacy to fill that prescription, which would at least let me help him with his reflux. I called upon my experience with the few autistic children I’d had as a teacher in my homeroom and classroom, thinking those few encounters would give me a leg up on raising my own autistic child. Boy, was I wrong.

As they say on “Game of Thrones,” I knew nothing, Kim McCafferty.

The year was 2004, a time when Jenny McCarthy was talked about a lot in the autism community. While navigating doctors appointments and the murky and ultimately deeply disappointing world of what passed for Early Intervention in northern Virginia, I spent any time I wasn’t interacting with my son researching autism on the internet, and God was it confusing.

There were parents claiming the only positive outcome of this diagnosis could be a “cure.”

There were autistic advocates and parents of autistic children claiming an alternative neurology cannot and should not be “cured.”

There were professionals informing me that studies showed that sign language gave kids an edge over learning to talk and should always be employed.

There were professionals informing me that alternative methods should always be explored, matching the child’s strengths to the appropriate communication system.

There were parents telling me not to vaccinate.

There were physicians telling me I’d better vaccinate.

There were parents explaining to me that a public school program was the way to go for their opportunities for mainstreaming, which should be my ultimate goal.

There were teachers sharing with me that despite the push for it, mainstreaming might not be the most important goal regarding my son’s future education.

As I look over my list, I realize not all that much has changed in a dozen years.

I did my best by my son Justin in those early and isolated years, reading and attending workshops whenever possible. I often felt the two of us were drowning back then, combating my son’s insomnia, aggression, gastrointestinal disorders and his adherence to having things a certain way (he would eventually receive a dual diagnosis of OCD and autism). My husband worked, our families were three hours away, and all my friends either had careers or were busy raising babies of their own. I often felt adrift at sea, anchorless.

Ultimately what I clung to to get through it all were my choices regarding Justin’s therapy, usually based on articles I’d read, clutching their information to me as tightly as I had clutched those initial articles which had in one instant completely altered my world.

I displayed my own rigid behavior regarding that information. According to studies I’d read, sign language more often gave way to words, in my opinion a must for my boy even though his fine and gross motor abilities were delayed.

I was told that he should absolutely attend a public school program both for the chance he’d mainstream, and so he’d make friends with neurotypical peers.

And if it weren’t for professionals who gently offered me alternatives to both of these choices and asked me to keep an open mind, despite my best intentions, I might have done my son more harm than good.

After we moved to New Jersey and actually received appropriate Early Intervention services (yay the Garden State!), I clearly recall one of the therapists from Rutgers gently pointing out to me that after more than a year of working with my son, he only had a handful of signs, and some of those were used sporadically at best. I remember initially feeling that using the PECS system meant giving up on words, instead of focusing on the fact that my then 22-month old might actually end up with a way to communicate his needs other than by mostly crying.

If I hadn’t listened, he might have spent many more months often frustrated by his mother’s inability to read his mind.

I had that same rigid mindset originally as from Virginia we attempted to find the most fantastical, amazing, perfect autism program in the perfect NJ town (oy!) because I wanted my son in the public schools for the mainstreaming opportunities, and I didn’t want him sent out of district. At the tender age of 3 I wanted him to have opportunities to engage with neurotypical peers. I wanted him to have friends, to interact with others. This was the most important goal in my life, more than losing that last seven “baby weight” pounds or consuming large amounts of chocolate every day.

OK, that last is still an important goal.

After four years in two different public school districts, it became apparent that the only one who cared about his interactions with neurotypical peers was me, and that his home school district really didn’t have an appropriate program for him anymore. I remember my mom, a special educator with three decades of experience, gently telling me to look at the big picture for Justin, that perhaps him having friends was not the most important issue now, that in fact Justin really didn’t seem to care about his peers. I recall making the mental shift to becoming open to sending him to a private autism school, where educators could help him focus on the academics he loved so much, where down the road he would have better access to job programs and adult programs, and hell, even a swimming pool he’d frequent daily during his eight-week summer program.

I’m still learning how to make the shift from wanting for Justin what I think he should need to what he really needs (it remains a learning curve for me), and by keeping an open mind, I know my choices for him have contributed to the thriving, happy teenager who loves school and loves his life. I still struggle to do this with both my boys (what parent doesn’t), often employing a “what would Zach/Justin do” mentality when considering my options.

And I still make mistakes. I am still sometimes slow to recognize a shift in need, still working on ridding myself of “what should be.”

But as with many things in life, I’m still a work in progress, and keeping an open mind is one goal I plan to keep.

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If Your Autistic Teenager Is Afraid to Get Behind the Wheel

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For some teenagers, getting a driver’s license might symbolize their freedom and new life as an adult. But not every teenager counts the days until they get their driver’s license. I learned to drive in high school along with the rest of my classmates. At that time in my life, I didn’t know I’m autistic. What I did know, however, was that I felt scared and instinctively knew I wasn’t ready to drive. I did great on the written exam. Being behind the wheel out on the road with the instructor was a different story.

There was too much going on that I felt like I’d simply shut down. I couldn’t determine the distance of other vehicles, especially when trying to pull out onto a main road, nor their speed. The instructor would tell me I had plenty of time to pull out onto the road, but I’d just sit there thinking the oncoming traffic was too close and going too fast. Out on the main roads, I’d get fixated on one thing, like someone tailgating me. Keeping track of everything going on around me, all the others vehicles, traffic lights, signs, pedestrians, handling the car itself, was all just too much for me to cope with. In the back of my mind was the ever-present realization that operating a vehicle on the road could possibly result in an accident, either fatal to myself or others as well.

Driving is a huge responsibility that one must be ready to handle. After I got my driver’s license, I reluctantly drove for a few months. I then made the decision it was too overwhelming to me, so I stopped driving. My mom became my official chauffeur. My mom was not the least bit upset at my decision. She sensed my intuition was correct. My classmates found this all quite hilarious and was great fodder for even more bullying. None of that was going to motivate me to drive. I simply knew I wasn’t ready. I didn’t start driving again until I was 40. I still didn’t know I was autistic, but I felt ready to take to the roads again. So, as if I’d been doing it my whole life, I began to drive again. The more I drove, the more confident I became. I follow all the rules of the road and obey all the traffic laws.

There are reasons why an autistic individual might be fearful of driving. One aspect is that driving is somewhat of a social function — you have to read the driving scene. There are also the risks of not being able to stay focused while driving, handling the constant changes that occur while driving, and dealing with the unexpected. It’s nonstop multi-tasking in a moving object, surrounded by other moving objects, possibly at high rates of speed.

When learning to drive, it is imperative that everything be broken down into small tasks. Then, once comfortable, put all the pieces together. It might take longer for someone to learn to drive, but a person should be able to take as long as they need to learn. The main goal is safety. It can be challenging for an autistic person to learn that others on the road might not follow all the rules like they do. Teaching drivers to expect the unexpected while driving is an abstract concept, yet a critical one. Allow frequent breaks during driving lessons to let each piece of information to settle in and not overwhelm the individual. Drive on familiar routes until fully comfortable. New routes can be overwhelming and should be avoided until the person is totally comfortable handling the vehicle and dealing with traffic in familiar surroundings. Teach the driver to remain calm when others break the rules of the road. Explain what road rage is and how to avoid instigating another driver. Teach them that playing music while driving might be a distraction.

Use empty parking lots on early Sunday mornings as areas to do simulations of driving and becoming at ease with being behind the wheel. Empty parking lots are also great places to have the person learn how to drive and operate windshield wipers, the air conditioner, defrost, etc., while in motion. And of course practicing parking and parallel parking.

Lastly, there’s the possibility of some interaction with law enforcement for whatever may be the reason. Talk about how to interact with a police officer or other such person.

If an autistic individual is fearful of getting behind the wheel, parents and family members need to understand the complexity of this matter. Don’t ever try to force him or her to learn to drive. Instead, offer your support, telling them you will be happy to help them whenever they feel ready to get their driver’s license and start driving. They will know when they are ready to take that big step.

Last November, a year ago, I helped my autistic husband Abraham get his driver’s license. I came up with a plan that worked beautifully! As an autistic person, I know how we tend to thrive on routine and do best when in our comfort zone. So here’s what I had him do in order to build that comfort zone behind the wheel. First, we went outside to my truck in the driveway. I got in the passenger’s seat, and Abraham in the driver’s seat. I told him to first buckle up his seat belt, then put the key in the ignition and start it up. Once started, I told him to shut it off and just sit there a bit. I then told him to get out, go back to house and come out and do it all over, 10 times! So he did it all, 10 times. It took awhile, but by the 10th time, he did it so routinely as if he’d been doing it for years. Once he was totally comfortable with that, I had him back up the truck in the driveway between all the trees, then go forward to the starting point. Again, 10 times. Then I had him go out the driveway to the subdivision across the street, drive throughout the quiet, meandering road there, then return to our driveway. Again, yes, 10 times. Then I had him go down the road to a different subdivision and drive around there 10 times. I had him take breaks in between as not to overload him. We started the whole process at 8 a.m. By 1 p.m, we were ready to venture out on some quiet, familiar roads where there was minimal traffic. He drove for an hour, then back home. I then taught him to parallel park 10 times, of course!

The next day, he felt ready to drive all around town, graduating to roads where he had to go 45 miles per hour to maintain pace with everyone. Of course, prior to starting all the “hands-on,” he had memorized the driver’s manual. One thing he had problems with was stop signs. He thought you actually have to stop exactly where the stop sign is placed, typically at least 20 feet from the actual intersection. He was taking it literally, so he’d stop right at the sign. I explained that if you really stop right at the sign, most likely you won’t be able to get a clear visual of the intersection. I showed him how you stop at the stop sign but slowly ease up to where you can clearly see the intersection and all oncoming traffic. Then he finally understood. On the third day, he took his driver’s test and got his driver’s license.

You must first feel totally comfortable sitting in the driver’s seat, learning how to put on the blinker, windshield wipers, A/C or heat, etc. Start out slow and just be calm. Remember to take many breaks. There is no rush. The one thing to always remember is safety is the most important thing!

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When I Feel Excluded as an Autistic Person

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I’m not the easiest person to take places. I’m not the easiest person to introduce. I don’t do a great (or sometimes even good) job of carrying on a conversation, especially with strangers. I stim. I often have a chew toy with me.

Some people might think of me as a liability or think they have to babysit me. They may want to make a good impression and are afraid I’ll say something wrong or make others feel uncomfortable because I’m not making eye contact.

But when I feel excluded, when I’m not invited, it really hurts.

If I feel like other people don’t believe in me, why I should believe in myself? If other people don’t think I’m capable, why should I try? I’m told I need to expand my comfort zone, but I need opportunities to practice this.

I have goals and aspirations beyond where I am now. I don’t want to be invisible for the rest of my life.

Autism doesn’t mean I don’t want meaningful relationships. Autism doesn’t mean I can’t learn or I don’t want to learn. Autism doesn’t mean people won’t like me.

When people do meet me, when they find out what I do and how I do it and that I have autism, they are typically impressed. They want to know more. They think it’s cool. People are learning to appreciate difference… at least some of them are.

I have feelings. I want to be appreciated. I want to be thanked for my work. I want to be talked to even if I can’t always respond. I want to be included. Don’t just talk about me. Get to know me. Get comfortable with inclusion.

If you are being excluded, my advice is to be nice anyway. Believe that it is their ignorance and not a reflection of you. It is not your fault. You did not choose your neurology. You are doing the best you can.

Follow this journey on Erinmmckinney.com.

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If You Think Autistic People Are Not Paying Attention... We Are

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I don’t need to look at you to pay attention to you.

Actually, looking at you while you talk is very distracting to me.

It may look like I am playing with something in my hands while my gaze is someplace far away, but I’m here with you – working to process things in my own way.

Looking at your face doesn’t help me. There is not a lot of information there for me. My brain doesn’t naturally pick up on expressions.

All of this got me in trouble a lot growing up, especially in school. Teachers really didn’t understand.

Some faces are too much. I don’t like to make eye contact with strangers. Often, I look at someone’s hair or mouth when I need to fake it.

I may not look at you while I am talking. This is not a sign of disrespect.

I am working hard to verbalize my thoughts. It’s not easy for me to focus on my words and your face at the same time, unless I know your face very well (or really like it).

To the outside world I seem disinterested and aloof, but I promise I am here with you, working things out in my own way. So much is happening below the surface.

When I appear to be off in my own world, I’m not as far away as I seem.

Follow this journey on Anonymously Autistic.

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Taking a Different Perspective on Autism

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To many who come across autism in passing, it may be considered a disability through which people are rendered in some way unable to function as “normal” people and thus (this part is usually unconscious) perhaps “less valuable” than those who do not have autism.

As the parent of a child with autism, I would suggest the reality is starkly different.

From what I’ve observed, the most obvious difference in the experience of autistic people is the degree of sensitivity. For an autistic person, opening the curtains on a moderately sunny morning might feel like having a very bright flashlight shone directly into their eyes at close range; a plate falling onto the kitchen floor might sound as disturbing as standing next to loud drilling on a building site without any earmuffs. The National Autistic Society has produced this short but powerful film to give us a glimpse of what it can feel like to constantly experience this sort of sensory overload.

But rather than being a deficiency, isn’t this a great attribute — an acute ability to perceive the detail of sensory information? Isn’t it a refined way of using our senses for what they are actually for? I feel the problem isn’t with the autistic person, who has these abilities, but with the rest of us whose sensory processing has been blunted by living in a world in which constant, extreme sensory stimulation is used as a substitute for excitement. Many of us seek out busy environments with flashing lights and loud noises as a means of having what we call a “good time.” We build shopping centers in confined, indoor spaces where the sound resonates and spend hours at a time there. Even the most benign children’s films are often aired at great volume in cinemas, with loud, sudden, intense emotive music. Over time, it seems our senses have adapted to the increasing prevalence of this sort of thing as the new norm, and we have learned to withstand it. The already heightened senses of some autistic people may not have. In a world in which we didn’t feel this compulsion to overstimulate ourselves in such a way and unintentionally overwhelm our autistic brothers and sisters, perhaps their sensitivity wouldn’t be “problematic”; I believe it could be a huge strength, as their refined senses would be a great asset.

Another aspect of the sensitivity of autistic people is the emotional part of it. It may often be assumed that an apparent lack of understanding of or reaction to emotional expression is indicative that there is no sensitivity to it at all. Again, I have witnessed the opposite. Someone raising their voice a little can affect an autistic person not only on the level of the sound itself, but much more so on the level of the intensity of the emotion, which they may feel powerless to stop entering them. An autistic person’s great emotional sensitivity might mean somebody else’s annoyance or anger is experienced as enormous pain. This is what I have observed in my son and other members of the community. The reactions of others can be deeply painful. Those with autism may not have the option of feeling OK with the negativity that is around them and are not given a positive way to be able to interact with it.

cover of the book transforming autism by guy shahar
Guy’s book, “Transforming Autism.”

In the book “Transforming Autism,” which explores this perspective at greater length, I use the example of a set of very sensitive kitchen scales, which can measure to a hundredth of a gram, versus a set of robust industrial scales. If a 5-kilogram rock was dropped onto each of them, the industrial scales would likely be unaffected and go on working as normal, while the kitchen scales would at best start to malfunction — giving unreliable or incomprehensible readings — and at worst be crushed. The kitchen scales, being so refined, can give a much better quality of reading than the industrial scales, but at the cost of their resilience. To me, the analogy is obvious. Think what the growing community of autistic people could bring to this world, how they could improve it, if only we let them; if only we recognized the richness and refinement within each of them; if only we didn’t keep piling 5-kilogram rocks on top of them.

I believe a state of enhanced sensitivity can enable those who have it to bring great perception and loving care into the world. In a circumstance where calmness and mutual consideration reigned, I believe they could not only be fully integrated into the world, but become pioneering leaders, setting an example for the rest of us. But the state is fragile. We may be preventing the expression of this enormous potential and creating a world that can be intolerable for them to live in.

Let us consider autism from this perspective, and begin to respect and appreciate for what it is the unique individuality of each autistic person.

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A version of this post originally appeared on the Transforming Autism Project.

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How a Mobile Phone Helps Me Support My Daughter With Autism

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My daughter is 11 years old, and she is on the autism spectrum. Her independence over the past year has grown, and she now walks many places on her own and takes public transport for slightly longer journeys.

With this growing independence, it seemed appropriate to buy her a phone. There seem to be varied opinions about young children owning phones, with lots of pros and cons as to whether children having access to technology is healthy. I initially bought my daughter a phone for safety reasons, for when she is out of the house. But over time, it has become a wonderful tool for us to communicate with each other about more personal matters, including when negative emotions arise.

My daughter can have difficulty expressing herself in spoken words. She often keeps her emotions to herself, and it can sometimes lead to a meltdown. When she was younger, we used a pen and paper when negative emotions arose so she could write her worries down and then share them with me if she wanted to. The emotion she feels often seems too big for her body, and finding a positive outlet has been key to reducing the frequency of meltdowns. Now she is growing, we have found another way to “talk” with each other that doesn’t need spoken words.

Utilizing technology to support communication is on the rise. There are many apps that have been developed for the purpose of helping people with autism communicate. We have found using a simple messenger app can help us communicate at the most difficult times: prior to and during a meltdown.

With the onset of a meltdown, words seem to leave my daughter. She tells me her thought processes become fuzzy and she can forget the strategies we have been working on. Talking to her when she is heading for or during a meltdown is often futile as it can just escalate her feelings of upset.

On occasion, when out of the house, my daughter has chosen to message me to tell me she isn’t feeling well. I always encourage her to share her feelings and started giving her advice on what she could do over text. This text communication has now grown to be used even when we are in the same house, particularly prior to or during meltdowns.

When my daughter is in a meltdown, all I want to do is cuddle her and make her feel better. The last thing she usually wants when she is in a meltdown is to be touched by anyone or hear words of any description, regardless of how loving they may be. So now, instead of physically helping her, I choose to text her that “I love her” and ask her what she wants me to do to help her calm down. Sometimes she will say “leave me alone” and other times she says she “doesn’t know how to calm down.” On these occasions, I text her a plan for calming down, including the strategies we have been working on so she can read and process them in her own time.

As my daughter has grown, I have had to be inventive with alternative ways to communicate. Using a messenger app with my tween daughter allows for emotions to be expressed, even when verbal words are lost and physical contact with people is not preferable. It keeps the whole household calmer in general and can help ease my daughter’s upsets.

One thing I have realized from parenting my daughter is there are many ways people can communicate. I know it may seem alien to some that a lot of the support I offer my daughter when she is distressed is through an electronic device, but for now it works for us, and we look forward to embracing whatever technology is developed in the future to enhance and support our daily lives.

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