5 Things I Don't Want to Hear as a Parent of a Child on the Autism Spectrum

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Unwarranted parenting advice — it’s likely we’ve all given it and we’ve all gotten it. Some comments are worse than others, but as a parent of a child with autism, some seem especially ridiculous.

Here’s what I’ve encountered:

1. You need to spank that kid. Don’t let her act like that.

OK, so no one has said this out loud to my face, but I suspect they wanted to. I could see the judgment written all over their faces. I already feel like a failure, thank you very much, I don’t need your help. But seriously, just no. Spanking my kid will not fix whatever behavior you don’t like. That behavior comes from a lack of ability to communicate. You might act the same way if you had no words.

2. She’ll eat it if she’s hungry enough.

Ha! That seems funny to me and also, no. She’ll go to the hospital before putting that chicken in her mouth. It isn’t simply an issue of being “spoiled” but rather something more complicated. GI issues, allergies and intolerances, texture aversions, panic at changes and unfamiliarity, etc. Take it from me, for some of our kids, food can be an issue.

 

3. Just get a babysitter; she’ll be fine.

There is no “just” about this situation. This babysitter would have to undergo more hours of training than someone working for the CIA. I’m exaggerating, of course, but training is necessary. Some of our children require a delicate hand and the specifics of caring for my child aren’t something that could be covered in a quick 15 minute chat. The logistics of managing pre-meltdown behavior is tricky, to say the least, and not something I’m willing to entrust to “just” anyone.

4. She doesn’t need to watch so much TV.

Here’s the deal, TV serves two purposes in our house: decompression and education. We all have our ways of unwinding after a hard day. For my kid, this is TV. In the early days when she didn’t have any words of her own, she did have echolalia. Movie lines became her language. So, yes, I’ll continue to let her watch TV, and it will probably be more than “they” recommend.

5. She’s fine, you don’t need to leave.

Yes, she does appear to be fine right now. She’s having a blast running around with her friends. But you don’t see what I see. I see the redness in her face, the wideness of her eyes, the forgotten personal space. You don’t hear what I hear. I hear the “too loud” tone of her voice, the quiver in her laugh, the “too fast” string of words she just spoke. But most of all, you’re not around for after. After the excitement has worn off, the exhaustion sets in. With it comes loss of language, irritability, and emotional imbalance. Sometimes this can last for hours. Other times days. I know she looks fine, but trust me when I say she isn’t.

As parents of children with autism, I believe we are their experts. We are their advocates. We know what they need and we need you to trust that. We know you mean well, but sometimes your advice is bets kept to yourself.

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Thinkstock image by Design Pics/Misty Bedwell


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Man With Autism Says He Was Fired the Day After He Asked for Accommodations

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Robert Castleberry, a former 4-H instructor in Camden County, Georgia, is taking his former employers to court for terminating him in January 2015, after he disclosed he’s on the autism spectrum.

Castleberry says he asked for simple accommodations so he could focus on his work, requests which were denied. “The way the offices were set up at one part of the building, the walls were literally paper thin, you hear every conversation, every tap of keys,” Castleberry told First Coast News

According to the court documents, Castleberry requested time off under the Family and Medical Leave Act to “obtain psychotherapy and psychiatric treatment for his disability.” The request also suggested ways Camden County’s 4-H program could accommodate Castleberry, including “being allowed to work in an isolated area, opt out of social events, wear noise canceling headphones, be provided with instructions both verbally in in writing [and] be given more positive reinforcement.”

Castleberry was granted leave for a 30-minute time slot once per week to visit a counselor. However, on January 7, 2015, when he repeated his request for accommodations, the county denied them the next day. Castleberry was then placed on involuntary leave.

An evaluation from a psychologist selected by the county confirmed that Castleberry is on the spectrum and supported his changes to his work environment, stating that it “would be beneficial in dealing both his sensitivity to noise and his social anxiety related to Asperger’s.” Shortly after Castleberry presented this information and documentation to the county, he was terminated.

Camden County responded that it did not violate state or federal law and that it “denies that it violated any of Castleberry’s rights under state or federal law, including the Americans with Disabilities Act and the Family and Medical Leave Act.”

The Americans with Disabilities Act prevents companies from discriminating on the basis of disability and requires companies to provide reasonable accommodations.

Castleberry told First Coast News he originally felt he belonged teaching at the 4-H program. “I could use my creativity in the classroom and I had this ‘Mr. Awesome’ personality,” he said. “Teachers were calling me ‘Mr. Awesome,’ teachers were calling me it, parents were calling me it… And I felt like I belonged and I did fit in.”

His evaluations from 2015 were also positive:

I think Robert does a fabulous job with the kids. He is always well prepared and the students love 4H days. He is full of enthusiasm for 4H and this is evident to the students.” and ““Mr. Castleberry interacts well with the students. He keeps their attention and makes 4H meetings enjoyable for them. They want to do their best when he is here. Mr. Castleberry comes prepared to conduct the meeting.

“People who have a disability deserve to work also,” Castleberry’s lawyer said. “They should have a normal life, they shouldn’t have their disability define them.”

Thinkstock image via KatarzynaBialasiewicz. 

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Dealing With Busy Places as a Person on the Autism Spectrum

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Busy places can bring about a lot of different issues for me. In a lot of ways, they can bring a lot of stress and can also be quite tiring. It is also yet another thing that has to be dealt with, and although I will never be able to deal with busy areas perfectly, there are a lot of different things I can do to make things easier.

The main things that can bother me when in a busy place are the numbers of people around, a lot of noise, a lot of different things to look at and also a lack of places to go that are out of the way for a break. If I find myself in a situation like this, the chances are I cannot cope for too long until I have to go home, or at least leave the busy area in search of somewhere quieter. This really only applies to any time I am attending a big event, and I do not go to many of these. A busy event is an extreme example; stress can also appear in every day situations as well. The ones I find most difficult are busy streets, corridors and stairs that echo, large open plan rooms such as libraries or cafeterias, traffic and anywhere playing loud music. It may appear, then, that I am quite limited in all the different things I can do throughout the day. This is not the case.

 

There are a lot of different things that can be done to make everyday situations a lot easier.

One thing I like to do is go for a short walk. This is something I do both when I am out for work purposes to break up the day, and also on any days off I may have. This is one of the ways I can take some time to process all the different things that have gone on thorough the day or even though the week. When I go for a walk, a lot of the time it is to the same places over and over again. The first time I tried it was quite difficult, but eventually I establish these newly discovered quiet areas as places to relax. It is quite rare for me to go off-track and actually walk anywhere different, but every now and then I may challenge myself to go somewhere else, or even go to a shop and buy a snack or something like that. It all depends on how difficult the day has been. If it has been quite an easy day, it may be possible to challenge myself. Going for a walk is not only something I do to get away for a short while, but also something I do to improve my ability to do everyday tasks.

The main way I cope with all the different things I find difficult is to moderate how often I have to deal with them. I can only manage so much, so I like to have different things in place to make sure I have an escape route. It is still something that imposes a lot of limitations on the way I live. When I do go out, it is often to do nothing in particular, and it is only within an area I am familiar with. One thing that helps sometimes is having a real purpose. I find that I endure going out for work quite well. This is both because of the routine I have built up, and also because I have a good reason to be out and that I would be letting myself and others down if I didn’t. That can act as a good motivator that can override any anxiety I may have about what is going on. It does not mean it goes away, though, because there are still times when I need to get away and this is where I would go off for a walk to find somewhere quiet.

This is never really going to go away. As much as I may try an number of different things to improve my ability to get out and do things, there is always going to be an issue. The main aim of all this is to get used to a more independent way of living. It is really quite basic and straightforward, but it is necessary. One other thing I also do to deal with busy situations is take time off at home. This is something I usually do after a particularly busy day. It usually involves spending time on my own, listening to the radio, reading or perhaps trying to cook. In a lot of ways it could seem antisocial; on a day like that I will not usually speak to anyone very much, even if there are other people in the house. But sometimes it is necessary just to go though what has happened the day before. If I have had a busy day, one thing I have learned is that I need some time to go through it all. This is especially the case if I have tried talking to people through the day, particularly if it was someone I would not typically talk to.

So there are a lot of different issues that appear when going out, either for leisure, or to work and shop, and there are a lot of different things I do to deal with these things. This is really just an overview of what is necessary sometimes. I like to have ways out when things are difficult to process.

I think I have made some good progress in that I now go out for walks on my own quite often, even if it is to the same places every time. I also thought it was worth explaining some of the importance of time off. I like to cut myself off from everything sometimes and focus completely on clearing my mind. The hope of sharing is that perhaps people relate to this in some way.

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When a Meeting Changed the Academic Trajectory of My Son on the Autism Spectrum

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We received the most amazing letter this week from our son’s university. It said, “On behalf of M University, it is my privilege to congratulate you on making the Dean’s List for the Spring 2017 semester. Your high grade point average for the past semester reflects both your academic potential and your hard work.” I sat with tears streaming down my face as I embraced this unforeseen moment.

I am sure you might be thinking I am just a doting mom, bragging on her freshman, here we go again, another helicopter parent of the perfect generation of over-achievers. Our story is different, however. As I sit with this letter in my hand, I am transcended back to many years of worry, wonder and fear over how my son’s life would progress. At the age of 12, he was diagnosed with Asperger’s. At the time, it was a welcomed explanation to years of learning challenges, meltdowns, slow fine and gross motor development, lack of friends to play with, and oddities no one could really understand or diagnose. Once we had the diagnoses, we became avid readers and learners, which led us to understand him in new ways we had not before. In grades one through eight, he was in a good public school system with an IEP and teachers who supported us along the way. They had special educators who worked with him often one-on-one. We advocated constantly to ensure his needs were met. We learned early on that partnering with the educators and supporting them led to a better outcome.

 

When he hit high school, however, the story changed. In his ninth-grade year, his class size jumped up to over 500 students. He was suddenly thrown into a separated world of kids with cognitive and behavior challenges. To focus and learn had become an everyday struggle. We had countless meetings inclusive of taking in our own psychologist to seek solutions and ways to help him succeed.

In the beginning of the second semester of his freshman year, we had a meeting that changed his trajectory forever. Assembled around a conference table in a dark, crowded room were all his teachers, guidance counselors, the principal of his class and his resource counselors. None of them seemed to have any solutions or confidence in our son’s ability to succeed. In that meeting, we were told there was nothing they could do to help. They suggested we put our son on a pass-fail system. They felt this would be easier and would allow him to learn without being held accountable to a grade. This would mean that at the end of high school, he would get a certificate saying he attended and completed 12 grades. He would not have a qualifying GPA or enough credits to continue to college. In this meeting, they told us in their opinion he would never attend college and a technical school might be an alternative.

I left that meeting angry and frustrated that in one of the best school systems in the country, they would not continue to help my child. Our great system was failing us and him. He spent that semester miserable, full of self-doubt and fighting hard to stay afloat. His assigned resource teacher stopped working to help him at all. At the end of the semester, she flunked him in math as she had predicted could happen. Our son was devastated. He had never failed a class. We were furious. As I watched this sweet young man crying and feeling like a failure, I realized we could not allow this to happen any longer. We had worked too hard, and we realized his potential. We had to find some place better for him to thrive. I assured him that he was not a failure and that we would seek other places that understood his way of learning and would help him achieve his goals.

In the city we live in, we are fortunate to have many options for schools. Unfortunately, many of them are not necessarily great for individuals on the spectrum. Through diligent research, my husband and I found a small private school three miles from our house that we had never explored. It turned out to be a small college prep school. They could handle an IEP, but more importantly, they were all about inclusiveness, community and fellowship. The minute we entered the halls, my son had a huge smile on his face and said, “I can learn here. I think I found my home.” The transformation that occurred over that next three years was phenomenal. He was awarded honors for character, and he learned to speak regularly in public. He made friends, participated on teams, and felt like for the first time that he was part of something larger than himself.

He graduated and was accepted into a local university as a cyber security major. He moved onto campus and thrived his first year. When I think back to that day of his freshman year, it scares me to think we could have just been passive. We could have listened to what they said and taken it as gospel. Fortunately, we did not. We refused for them to define his future. We continued to work with the staff in his new school as a team. They were insistent in teaching him to advocate for himself. By his senior year, he was running his IEP meetings to identify his accommodations needed to ensure academic success. The lesson we took away was never, ever stop advocating for your child. If you don’t like the answers you get when you have these amazing children, never stop pushing the envelope and seeking more on their behalf. Success is possible. Don’t ever give up and don’t ever stop dreaming of what is possible versus focusing on what is not.

For our son, making Dean’s List has tremendous significance. It was the culmination of 19 years of fighting, seeking, loving unconditionally, and believing in our child despite the challenges. We cannot wait to see what the next three years of college brings and what his future holds.

Editor’s note: This story has been published with the permission of the author’s son.

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Thinkstock image by Benis Arapovic

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Mom and Former Police Officer Creates AutismTalk App to Help Police Interact With People on the Spectrum

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Former police officer and mother to a child on the autism spectrum, Stephanie Cooper created AutismTalk App — an interactive communication app that helps first responders communicate with people on the autism spectrum.

Read the full version of Mom and Former Police Officer Creates AutismTalk App to Help Police Interact With People on the Spectrum.

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Mom and Former Police Officer Creates App to Help Police Interact With People on the Spectrum.

Less than a year ago, Stephanie Cooper started Autism Law Enforcement Response Training (ALERT).

This program provides police officers with specialized training and sensory kits designed to help autistic people.

Now Cooper is taking her mission one step further through AutismTalk app.

The app helps first responders communicate through picture-based messaging.

“In every autism training class I have taught, I have had numerous law-enforcement officers and first responders ask the same question,”

“‘Why isn’t there an app for us?’”

The app includes picture communication boards with categories for law enforcement, firefighters and emergency medical services (EMS).

“This app is important to me because if something were to happen to me, first responders will be able to understand and have that extra tool which will allow them to communicate quickly with my son.”

AutismTalk app costs $8.99 And is available for ios and android.

A third of the app’s proceeds will be donated to alert to provide more police training.

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What I Mean as a Mom When I Say Autism Awareness and Acceptance

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Awareness and acceptance have been the new buzzwords in the autism community lately. No, let me correct that — autistic individuals and their loved ones have always wished for these, but people are talking about it now more than ever. So what exactly do these words mean? Are they just another shooting star or are they the guiding light for the rest of the world?

I wish I could pick up a microphone and chase people on streets, asking them these questions and figuring out society’s collective understanding when it comes to these two words. However, since that seems like a difficult proposition, I’ve decided to put forth my perspective of what it means when I say I want the world to be aware of what autism is and be more inclusive of kids with different needs.

To me, autism awareness is knowing that autism is not a disease but a set of developmental delays leading to social, communication, behavioral and sensory challenges.

Awareness is not just knowing that autistic people can have meltdowns, it’s also understanding what leads to these meltdowns and how we can help.

 

Awareness is knowing that not all autistic kids are geniuses with some social awkwardness, and it’s also knowing that not all autistic kids have intellectually challenges.

Awareness is understanding that each autistic individual is as distinct as any other person out there; that they don’t come out of a factory with the same set of “quirkiness.”

Awareness to me is knowing that autism is not just about flapping hands, spinning objects, repetitive behaviors and shutting ears. It can also be about working through challenges and breaking stereotypes. It is in knowing that Autistic people can also achieve the extraordinary if provided the right channel.

Awareness is understanding that autistic people are not “weird,” they are different in their own unique way.

Awareness is understanding that autistic individuals might retreat into their bubble often, but they are not invisible.

Awareness is not just knowing that there is a large percentage of autistic individuals out there but also understanding that they deserve a life of respect, too.

Awareness is understanding that autistic people might not all communicate the same way, but they still have a say.

Awareness is understanding that autism doesn’t have a “look” or a “face” to it.

Awareness is not just running marathons and lighting it up blue, it’s enlightening our minds, too.

Awareness is understanding that it is the path to acceptance.

Let’s talk about acceptance.

A lot of us are under the false notion that we embrace autism acceptance, but do we? It’s not acceptance if you have a special classroom for kids with different needs but you refuse to have them in the graduation parade or deny their award for their hard work. When there are autistic kids still being bullied, acceptance feels a long way from home.

Acceptance is not just calling an autistic kid over for a birthday party. It’s acceptance if you teach your kids to make the effort to connect with that child.

Acceptance is the pressing need to go to that child, that peer who might be sitting alone, reach out, and try to communicate and be a facilitator, if not a friend.

If you think you are doing an autistic individual a favor by offering him a job or an opportunity, it’s not acceptance. Acceptance is not when you condescend, it’s when you respect them for who they are.

Acceptance is not just smiling gently at an autistic child but also raising your voice when you see someone being unfair towards them. If you say nothing, you have still some distance to cover.

Acceptance is not just joining your friend in a walk or wearing a custom t-shirt saying how you stand by them. It is in teaching your family and your friends about appreciating the challenges that autism can bring and being a friend to people in the autism community.

Having a special day at school or a small classroom speech highlighting a peer’s autism sounds more patronizing than inclusive to me. How about actually creating more inclusive environment and making them part of the everyday classroom so all kids can learn the normalcy of co-existing. That, I would call acceptance.

To me, acceptance would be when every playground has kids of all needs playing with each other, when no kid is sitting alone in a cafeteria because he has needs different from others, when his sensory needs are not mimicked and laughed at but understood and accommodated. That would be acceptance to me.

Acceptance is when a video of a child walking hand in hand with an autistic child or a stranger helping a family with an autistic child is not one in a million but run of the mill.

Acceptance is more than just opening doors — it’s opening your heart and your arms, too.

While I ask for more understanding and inclusion from many, I also am thankful for those who have made the world a better place for people on the autism spectrum by their thoughts and actions.

Just like I wish the world to be free of war, poverty and hunger, I hope one day we will all learn to respect each other’s differences. That one day we will be more aware and more accepting of autism and every other disability.

Follow this journey on Tulika’s blog.

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