By Debra Muzikar
As I write this blog, there is a video that has gone viral with a hashtag #StoptheBullying showing images of a ten-year old child (who happens to be Donald Trump’s child Barron) making a case that the child is autistic. This last week Rosie O’Donnell added to the speculation by suggesting that the assertions made in the video were true and asking the Trumps to come forward with the diagnosis to bring more awareness to autism. O’Donnell who has received a lot of backlash from sharing the video defends her position by saying she has an autistic daughter and recognizes the signs.
Yesterday, as I watched the video for the first time I felt uneasy. After reflecting on the video overnight, waking up this morning to see the video posted on my Facebook wall (and then deleting it at autism advocate Dena Gassner’s urging), I feel the need to address concerns I have regarding the video.
The right to privacy
People have the right to privacy about their diagnosis. In the United States there are HIPAA laws that protect people’s privacy about medical diagnoses. The Trumps have not come out with a disclosure of a diagnosis. Whether or not the child has a diagnosis is speculation and an invasion of this family’s privacy. If the child does have a diagnosis and the Trumps are not disclosing it, that is their right and it should be respected. If the child doesn’t have a diagnosis its not for the public to make that diagnosis based on a collage of videos of the child.
Posting unauthorized videos of a child is a form of cyberbullying itself
Ironically, the video being distributed has a hashtag #StopTheBullying. Cherrypicking images of a child and making a case for a diagnosis without that child’s or that child’s parents’ permission is a form of cyberbullying. Postings on the internet are forever. This video can affect this child’s future in unforeseen ways. Maybe this is why Melania Trump has come out with a position about children and cyberbullying.
Official diagnoses should be made by professionals
It is not uncommon in the autism community to see a person who has “autistic characteristics” and come to a conclusion that the person may be autistic. It is not uncommon to suggest that person pursue an “official” diagnosis from a professional. Many parents of autistic children, such as myself, are good at recognizing the signs of autism. This does not mean we are authorized to make a diagnosis. I certainly wouldn’t share in public forums my opinions about a child’s diagnosis.
The video itself is offensive
The video has somber music and refers to the autism “epidemic.” Watching the video was reminiscent of watching vintage Autism Speaks ads. This type of negative media messaging is harmful for the autism community and is against the neurodiversity model the Art of Autism promotes.
As Shannon Penrod points out we in the autism community must lead by example
Shannon Penrod addressed this issue on the Autism Live show a couple weeks ago – “Stop Saying Barron Trump has Autism”
At this time in history, when reliable news has been replaced by twitter, Instagram, youtube and Facebook posts, we as a community need to be mindful about what we share.
This is not meant to be a political post or an endorsement of Donald Trump and his politics.
I also urge others not to participate in bullying this child. The Trumps were including their son in an important family event. Years ago, when I, as a professional woman, was attempting to penetrate the market place, I was often called a “Bull Dyke.” Initially this embarrassed me. In time, I realized, to be embarrassed by being called that term implied that I considered it a negative term – that being a lesbian was not ok. So I let my enemies wonder. There is NO shame inherent in having a child on the autism spectrum! A child on the spectrum is often as blessed as he or she is challenged. As Dr. Temple Grandin has said, “Without autism traits we might still be living in caves.” Now that’s a truth! Barron Trump is an adorable and promising little boy.
WITH YOU ON ALL COUNTS.
I agree. I see the same problem in missing persons news releases. While in some cases it may be helpful to disclose autism, bear in mind a missing person is clearly not consenting. In some cases, the police put “functioning age comparisons”, even if this was never part of the person’s diagnosis. In most cases, only basic physical descriptions are needed. If you are someone who shares missing persons releases, please take them down off all websites and social media once the person is found alive.
I agree that this is a private matter; however, at some point, some things will become obvious whether or not a diagnosis is made public. However, why should the American people pick up the tab for their private parental decision? And it’s not cheap. Other first families have transitioned, and they should be no exception. If they choose to stay in NYC, they should pay or share in the exorbitant security costs. They need to do what is best for the whole country. I am fairly certain that they have experts in the DC area more than qualified to handle whatever the issues are with respect to the young child. Maybe all of this should have been taken into consideration before running for office.
I only agree to some extent. Honestly the reason I’ve been speculating is because I like to give people the benefit of the doubt, even Trump who I think is a huge danger to this country. And having an autistic son myself, I could completely understand the need to stay in NY until Barron finishes the school year, if it’s because the kid is autistic or has other needs. If he’s a typical 10-year-old (or however old he is, I think that’s about right), it’s a lot harder to justify the expense of protecting the family in NY. So in that regard I actually think it makes sense to speculate — I’ve been using it in defense of their decision to stay in NY (and again, I’m strongly anti-Trump in general, I’m just very sympathetic to the possibility that the child needs special consideration in this regard.
You are completely right in everything you said in this article and I want to thank you for writing it. But there is an even more important reason why people shouldn’t tell others when their child has autism.
People don’t understand what autism really is and many of those experts who think they do, have it wrong. Children are recovering from autism, and yet the general public and most doctors are unaware that this is even possible. As soon as the A-word is used, people assume that it means “game over.” They do not know that this is a neuro-immune condition that is medical, treatable, and surmountable.
Restoring a child’s health by treating the hidden infections, viruses and everything else that has overloaded their immune systems isn’t easy. But it is being done. And as the research and medical treatments improve even more, more children will improve and get better. When kids get proper medical, behavioral, and educational interventions full recovery becomes possible. And these children can lose their diagnosis completely.
Ryan is now 28 and an aerospace engineer. He is one of the lucky ones to be in the right place at the right time to get the interventions needed to fully recover. But when he was diagnosed at age four, my son had every one of the thirty-five symptoms listed on the National Autism Society’s website. We knew something was not right with our son before the “experts” predicted my son would end up in an institution. The day Ryan was diagnosed was the worst day of my life. The psychiatrist gave my son and us a life sentence and ripped away every dream we had for our child. We were told there was no recovery from autism, no cure, and no hope… Or was there?
My son definitely acted different and the stares and comments other people made were often cruel. But I still never told them my son had autism. Only our family members, Gina our babysitter, Pam our behavior therapist, and very close friends knew Ryan had been diagnosed.
It might have been easier for me to explain his bizarre behavior by revealing he had autism. But it would not have been what was best for Ryan. I never explained his odd behavior by telling anyone his diagnosis, especially the people who worked with him.
I learned early on that when we told people about the “A-word,” they lowered their expectations for my son. I once made the mistake of revealing his diagnosis to Ryan’s piano teacher. I was so proud of all Ryan was learning and thought this gifted teacher should know just how much he really had accomplished with my son. But after I told his teacher, his music lessons were never the same. I had to stop the lessons because the teacher started to feel sorry for my son. He no longer treated him like he was capable of learning and let him do whatever he wanted.
In the second grade Ryan was placed in a class where the teacher had a special ed. credential. She knew a little too much about autism and just what my son shouldn’t be able to do. This gifted teacher had lower expectations for Ryan than the other children. She knew what autism was and had extensive knowledge. But that year Ryan didn’t progress much. His teacher was just a little too accepting of “his disability.” She thought she was being loving and accepting. She really did try to help Ryan. But she was helping him in the wrong way to become the “best little autistic” boy he could be. Empathy and understanding were not what my son needed. He needed someone to expect him to do things the same as everyone else. Ryan needed someone to enforce the rules every child needs to follow.
Currently, the “A” word has a negative connotation. With understanding that will change. When it finally becomes accepted that this is a medical condition and kids can get better, we will change the autism paradigm. Or maybe we should just stop calling it autism and start calling it what it is, a messed up immune system. There is hope because it is possible to have a different outcome. But until people get it, I would never share that a child has an autism diagnosis.
That being said, we need to tell people something so they know we are aware there is a problem and it is being addressed. This is explanation I used, “Ryan’s immune system wasn’t working properly when he was younger. We now have a doctor who is really helping him and correcting all the medical issues. And we are working hard to catch him up on all the things he missed.”
As parents we can never let anyone limit our children or prevent us from having dreams for their future. The really hard part is having a big enough imagination to see what your child may be capable of one day. Please never give up until you find the answers, no matter how hard your kid or the “experts” try to make you. And remember miracles do happen, but they only happen by hard work and sweating!
Here is another reason not to share when a child has autism. People don’t understand what autism really is and many of those experts who think they do have it wrong. Children are recovering from autism, and yet the general public and most doctors are unaware that this is even possible. As soon as the A-word is used, people assume that it means “game over.” They do not know that this is a neuro-immune condition that is medical, treatable, and surmountable.
Restoring a child’s health by treating the hidden infections, viruses and everything else that has overloaded their immune systems isn’t easy. But it is being done. And as the research and medical treatments improve even more, more children will improve and get better. When kids get proper medical, behavioral, and educational interventions full recovery becomes possible. And these children can lose their diagnosis completely.
Ryan is now 28 and an aerospace engineer. He is one of the lucky ones to be in the right place at the right time to get the interventions needed to fully recover. But when he was diagnosed at age four, my son had every one of the thirty-five symptoms listed on the National Autism Society’s website. We knew something was not right with our son before the “experts” predicted my son would end up in an institution. The day Ryan was diagnosed was the worst day of my life. The psychiatrist gave my son and us a life sentence and ripped away every dream we had for our child. We were told there was no recovery from autism, no cure, and no hope… Or was there?
My son definitely acted different and the stares and comments other people made were often cruel. But I still never told them my son had autism. Only our family members, Gina our babysitter, Pam our behavior therapist, and very close friends knew Ryan had been diagnosed.
It might have been easier for me to explain his bizarre behavior by revealing he had autism. But it would not have been what was best for Ryan. I never explained his odd behavior by telling anyone his diagnosis, especially the people who worked with him.
I learned early on that when we told people about the “A-word,” they lowered their expectations for my son. I once made the mistake of revealing his diagnosis to Ryan’s piano teacher. I was so proud of all Ryan was learning and thought this gifted teacher should know just how much he really had accomplished with my son. But after I told his teacher, his music lessons were never the same. I had to stop the lessons because the teacher started to feel sorry for my son. He no longer treated him like he was capable of learning and let him do whatever he wanted.
In the second grade Ryan was placed in a class where the teacher had a special ed. credential. She knew a little too much about autism and just what my son shouldn’t be able to do. This gifted teacher had lower expectations for Ryan than the other children. She knew what autism was and had extensive knowledge. But that year Ryan didn’t progress much. His teacher was just a little too accepting of “his disability.” She thought she was being loving and accepting. She really did try to help Ryan. But she was helping him in the wrong way to become the “best little autistic” boy he could be. Empathy and understanding were not what my son needed. He needed someone to expect him to do things the same as everyone else. Ryan needed someone to enforce the rules every child needs to follow.
Currently, the “A” word has a negative connotation. With understanding that will change. When it finally becomes accepted that this is a medical condition and kids can get better, we will change the autism paradigm. Or maybe we should just stop calling it autism and start calling it what it is, a messed up immune system. There is hope because it is possible to have a different outcome. But until people get it, I would never share that a child has an autism diagnosis.
That being said, we need to tell people something so they know we are aware there is a problem and it is being addressed. This is explanation I used, “Ryan’s immune system wasn’t working properly when he was younger. We now have a doctor who is really helping him and correcting all the medical issues. And we are working hard to catch him up on all the things he missed.”
As parents we can never let anyone limit our children or prevent us from having dreams for their future. The really hard part is having a big enough imagination to see what your child may be capable of one day. Please never give up until you find the answers, no matter how hard your kid or the “experts” try to make you. And remember miracles do happen, but they only happen by hard work and sweating!
For heavens sake what is with the totally overblown reaction to the question whether someone has autism? How in earth is it bullying? Is it considered so totally shameful, and if so, isn’t this more damaging to the person than innocent inquiry? Wouldn’t it help to normalize the condition and help others who are afflicted accept themselves and others?
I suspect the explosive reaction to the mere question of the existence of some degree of autism, or characteristics related to it has to do with the shame of others, and in Trumps case, shock and horror that Barron may not be what they or others consider to be ‘normal’. THEY are the ones doing potential harm to Barron and stigmatizing others who need to understand this condition and it’s possible symptoms. How does this help anyone? Good grief already!
Trump is a vile degenerate. We want him to accept and embrace his son. We are uncomfortable with their denial because it represents a rejection of Barron himself. It’s gross. You are overstating the “bad behavior, Miss Manners” aspect of this. They are a notoriously public family and dad is separating immigrants–seeking refuge–from their children at this very moment. He ought to be judged for failing to lovingly embrace his own child, too. He’s ashamed of Barron and it is disgusting because, as far as I am concerned, Barron and Melania are the best thing about that absurd, narcissistic family. Barron is the most likable Trump son or daughter. He may be their only hope for civility. Let us pray: Barron will not grow up to compare Syrians to Skittles, eh?
I don’t think anyone is going after Barron. I think it’s his parents that people are asking questions of. To me it’s tantamont to having your neighbor locking his child in the house and never letting him be seen. You are going to speculate. This is the White House. Presidents children have always been seen. Look at the Kennedy children. The world loved them and still does. Nixion daughter was married at the WH. Obama’s were filmed on the way to church,at WH dinners and so on. Then of course there’s Barron behavior in public. People saw something. So they asked questions, they speculated. Trump like to hide things. Is this one of those things? An imperfect child?