The Sunny and Not So Sunny Days of Autism On the Airwaves
By Cathy Jameson
It would be difficult, if not impossible, for someone to create a character that depicts all that autism encompasses. From the very high functioning, who are able to live day-to-day independently, to the lower functioning individuals, who will never be able to live on their own, there’s a reason why autism is called a spectrum disorder.
Affecting one’s language skills, social skills, and other developmental skills, the disorder has been identified in 1 in 68 children. Using data from children born in 2002, the current rate of 1 in 68 was announced in the spring of last year. Many believe that the autism rate is much higher than what the officials chose to present. Data used to calculate the current rate does not include my son nor other children. What about the many children who’ve fallen onto the spectrum since 2002? They exist. When will they be included in the national number? My guess is not for awhile. I don’t think the public is ready for that.
It’s no secret that the autism rate is rising, but I think the public’s been kept in the dark about it and about how challenging autism is.
I’d love for more people to understand that the autism my son lives is different than what is shown on air. I think it would help. It would help him—people would see him in a new light and want to help him. It would help us—people may not be so quick to judge. And it would help the public—they might then realize just how severe this disorder can be.
My son is lower functioning. The autism is severe. He is non-verbal. He suffers from seizures. He needs assistance to eat, to bathe, and to use the toilet. He’s in 7th grade and is still in diapers. Our friends and family understand how great his needs are, but I fear that much of the public has yet to catch up. Catching up is hard to do when the autism rate is downplayed on the news. They can’t catch up when autism is depicted on popular television shows and movies with mostly highly intelligent and verbal characters. The public cannot know the autism reality that my son and so many others like him live if that side of autism is not talked about out in the open.
The severe autism, like the one my family sees daily, may be too much for someone to watch. But, I’m willing to bet if it is talked about and if it shows up consistently in a shows’ storyline, it could make a difference. I don’t think creating a cartoon character set on a whimsical backdrop would do though. In order for it to really make a difference, the story would have to be raw, and the characters would have to be as true-to-life as possible.
If that type of show ever was aired and if it included the autism meltdowns, the seizures, and watching the family to crumble on camera when they hit the lowest lows, then people could see firsthand what life is like for the lower functioning, for the skill limiting, for the sometimes difficult and for the sometimes painful side of autism. That sort of show won’t be pretty and may be difficult for the public and the faint of heart to see, but I guarantee that it would get people’s attention.
We need more than pretty pictures and more than just awareness. We need action. Painting a pretty picture of autism may help encourage some autism acceptance, but if people don’t understand just how serious and how limiting this disorder can be, no amount of marketing will prepare the public for what’s coming. And what’s coming?
More autism.
The autism rate went from 1 in 10,000 in the 1980s to 1 in 68 in 2014. It’s estimated that it will affect half of our nation’s children by 2025. Before those numbers rise, I am hoping that those who choose to shine the light on autism will shine the light on the entire spectrum. It would be a disservice not to.
Cathy Jameson is a Contributing Editor for Age of Autism.
To N Bond. If you want to really help children and adults with autism you need to quit working at the Marcus (so called) center. In my opinion it is at best just worthless but is actually harmful. They pay no attention to the physical illness side of autism ... Controlling meds helmets and guards are not going to help anyone feel well enough to face the challenges of autism much less get better. And as I recall the first step at intake is to require a new round of vaccinations. Marcus has always been way behind, they didn't even have basic OT and PT until what the early 2000s and started a little ABA after that. Marcus is just there so the CDC can claim there is an "autism center" nearby
Posted by: L Land | October 27, 2015 at 07:23 PM
PBS, Sesame Street, Dora and other shows geared towards toddlers now have episodes pushing vaccines on these young impressionable minds. Once they push Aluminum, thimerosal/mercury, formaldehyde, cells of pigs, cows, dogs, monkeys, chicks, insects, msg, dangerous peanut byproducts, ether, ammonium salts and other toxins on innocent babes-the Autistic audience began to grow and so did Sesame Street's desire to pander to a wider audience.
Posted by: Shelley Tzorfas | October 26, 2015 at 12:50 PM
Here's though: Families with Autistic children should send a video of their child who has Autism to Sesame Street and every media outlets that has run this story about how anti-vaxers are upset because Sesame Street has an Autistic Muppet and show them in a 1-2 minute presentation the day to day struggle and behaviors or an Autistic child. It's time these people be given a reality check.
Posted by: Danchi | October 26, 2015 at 08:36 AM
Sesame Street is a show for toddlers and preschoolers. There should not be a muppet with any serious disease on Sesame Street simply because it is inappropriate to burden this age group with the reality of any serious disease. It is just inappropriate. Burden with the gravity of this illness Congress, our President, the CDC, the NIH, the FDA, and all the other people who are supposed to be recognizing and solving our most difficult problems, not 2 and 3 and 4 year old children.
Posted by: Linda1 | October 26, 2015 at 08:01 AM
It would be great if Sesame Street was able to portray the severely autistic person suffering from seizures. But I suppose that is something so foreign to these folks that they have to pick the highest functioning which compromise the minority to gain the sympathy of the majority of folks who have never been shown what it's like to live with severe autism and how much support and services are needed to make them more productive members of society that can live a more meaningful life. The fact is these autistic people, this forgotten minority, are the most vulnerable, the most needy, and yet we continue to forget this minority in the autism community.
Posted by: Matilda R | October 26, 2015 at 02:50 AM
I notice some cut and paste on this page, by those who are "surprised" that anyone could possibly make a connection between vaccines and autism...
Posted by: Rae | October 26, 2015 at 12:27 AM
I too am tired of all the emphasis on high level individuals with autism. My son is an adult, age 42, who has minimal communication ability and bowel issues; however, he also is what is called a dual because he is dually diagnosed and actually he has a different type of disability too. Those with autism, IDD, and mental health issues are never mentioned. When they have outbursts our local hospitals refuse to address them because they don't fit into groups for the mentally ill. There is an organization called NADD that you who fit into this category should join. It fits the issues of my son and I am sure many others.
Posted by: Martha Moyer | October 25, 2015 at 11:30 PM
This was recently discussed on my Linked In page. You are right. The spectrum of autism is real. I work in Atlanta at the Marcus Autism Center. I work on a research project where we are trying to identify children as early as possible. We see children walk in for services and others where my co-workers have to wear head gear and body armor to walk them down the hall. One of my goals is to
Open an truly inclusive center for all children in the spectrum with all abilities. The information and baby steps I think will assist everyone in the long run . I just want you to know I see you and I hear you.
Posted by: Naima Bond | October 25, 2015 at 10:26 PM
Actually Cathy, I would say that presenting a Muppet with minimal deficits in social skills or communication is not only a disservice to kids with severe autism, but also a disservice to those who are higher functioning. The likely takeaway from the show is despite their milder ‘quirks’ such kids will go on to succeed. This is simply not true. I work with both low and high functioning autistic adolescents and the high functioning ones still face significant challenges. In addition to issues such as anxiety and depression, these young men just are not succeeding and are often unemployed, remaining at home dependent on their parents. Statistics bore this out with the unemployment rate for autistic individuals approaching 90%, and 84% of adult autistic individuals are said to live with their parents. Indeed autism is a spectrum of varying abilities, but we should be wise to the dramatic skew of significant, lifelong struggles amongst the vast majority. Cute Muppets aside, autism is and will always be a scourge.
Posted by: Greg | October 25, 2015 at 10:17 PM
Last I read one in every THREE young children in the US now has ADHD, Autism, dangerous allergies or Asthma. Take the Peanut allergies for example. Vaccines have Peanut Byproducts in them and now that our children get more than 70 vaccines since the government gave permanent immunity to the vaccine maker's.. it should be of no surprise when children get anaphylactic shock or worse. It was a few generations ago that the children could eat peanut butter and jelly sandwiches without dropping dead. Today, those peanut butter kids, have children that rely on Epi Pens, Emergency Rooms, and strict supervision just to remain alive in case a peanut falls into the food. The shame is that the general population has no idea how and why peanuts became weapons of generational destruction? When the TV and mainstream news begins to inform folks, that is when our children might become well again like they were in the 60"s, 70', and 80's.
Posted by: Shelley Tzorfas | October 25, 2015 at 09:28 PM
Everybody and their mother gets their own reality show these days, so why not give a family living with severe autism one? Talk about showing the world what it's really like to bear this cross daily. But what network would have the courage to put it on the air? What if vaccine injury were mentioned by the family on the show? Well, so much for that idea...
Posted by: Marie Simonton | October 25, 2015 at 09:19 PM
While I appreciate TV maybe trying to educate, it is like anything now a days, it makes them feel better at the expense of what is really happening. Most people have no idea about autism and to give a false representation is, well, annoying. There is almost a romantic element by leaving out the severe aspects. Some will think, oh big deal, so your kid has some social issues not knowing how these kids and their families truly suffer. I don't know, I think the public should be made aware of the severe side of autism. It's time.
Posted by: NanNJ | October 25, 2015 at 07:33 PM
Jennifer T;
Salt in the wound is when you witness your child, or children and for me include a grown up husband - vaccine reactionssssss- the worse reaction though was the third DPT shot - for my son. Bad - and I get someone that says they are surprised and where is the scientific studies.
what do you call it when human beings witness something happening -- -- and reports it -- OBSERVATION? Oh, but my lying eyes - shame on them.
Posted by: Benedetta | October 25, 2015 at 05:37 PM
Ditto what Danchi said.
Posted by: Laura Hayes | October 25, 2015 at 05:00 PM
I knew that vaccines were related to my children's severe and many allergies due to the timing, and I have come to realize our autistic son's many, many allergies and suspected candida overgrowth are related to his autistic symptoms. His eczema used to flare around his feedings as a baby so I knew it was related to his allergies. But I think it was around the time we took him off his free amino acid based formula and put him on goat's milk around 1-1/2 years old that he started showing signs of autism even though we had taken a break from vaccines after his second round of 7 doses at 4 months old. But it got way worse with self injury and less verbal after he had more vaccines and an increased diet, 5 doses more at 2 years, 1 month and 9 doses at 2 years, 11 months, which included a fourth Hep B when they're only supposed to get 3 Hep B doses total! I didn't know they made a 5 in 1 by then. I thought he was getting 7, not 9 vaccine doses, and he also got the MMR at the same time plus one other one! The medical field says that allergies don't cause eczema but I know they do, and I also think candida overgrowth plays a role in eczema. And when our son gets an allergic migraine or headache, that's when he'll try to injure himself. Modified SCD diet and supplements help a lot but he still has a lot of struggles.
Posted by: lorim | October 25, 2015 at 04:22 PM
I am surprised about the comments around vaccines causing autism as there is sufficient supporting research to contradict that statement and any scientific research that is current is quite clear in pointing out that vaccines are not the cause
************
Show me one scientific study, which proves that vaccines don't cause autism.
Posted by: Barry | October 25, 2015 at 04:05 PM
If they teach "acceptance" of something that doesn't look much like the autism that small children may see in their own neighborhoods, I'm not sure what they accomplish. Maybe less acceptance of those they don't represent through creating false expectations?
Posted by: Jeannette Bishop | October 25, 2015 at 02:35 PM
Jennifer T,
Most of the commenters have seen their (our) children react to vaccines with autism. No doubt. Why do you think so many scientific studies reject our experience (while so many others confirm them)? Do you suppose it could be because of the money and power wielded by the pharma companies which make vaccines, and pressure politicians and media to only reach the hypotheses they favor? If you have done no independent research on this subject, you do not have a right to come here and put us down with your lack of awareness.
Posted by: cia parker | October 25, 2015 at 01:58 PM
I am happy that Sesame Street is at least making an attempt. It would be difficult to show a severely autistic character to preschool children but starting somewhere is better than ignoring that there are many children out there with autism.
I am surprised about the comments around vaccines causing autism as there is sufficient supporting research to contradict that statement and any scientific research that is current is quite clear in pointing out that vaccines are not the cause
Posted by: Jennifer T | October 25, 2015 at 01:42 PM
Devastatingly Autism has fostered in a new reality that did not need to be. Parents of autistic children love their children dearly and Sesame Street mocking (IMHO) these children must be heart wrenching. If the addition of an autistic character was part of an evolution on the show as it moves in to the 21st century that's one thing but following on the heels of Elmo & the Surgeon Generals vaccine push you know it's part of the CDC/Pharma propaganda plot and that is repugnant. Vaccine damaged children are not the same as other children be they Autistic, suffer from peanut allergies, asthma, diabetes, obesity, chronic bowel disorders, etc. To try and normalize these conditions that have become a disproportionate number to the normal child population should be obvious to people who use critical thinking and common sense is ridiculous. Ask those people who "believe" Autism is normal-can an Autistic child stay at your house for a week? No disrespect to parents of Autistic children.
If the tide doesn't turn very soon 1 child in 2 will be on the Autism spectrum -Half of All Children Will Be Autistic by 2025, Warns Senior Research Scientist at MIT: http://healthimpactnews.com/2014/mit-researcher-glyphosate-herbicide-will-cause-half-of-all-children-to-have-autism-by-2025/.
Autism is the most obvious brain injury from Vaccines but lets not forget there are a dozens of injures children and adults suffer from that needle at the end of a syringe filled with toxins. They all deserve equal attention. However, to start a domino effect in revealing Vaccine damage to the world-exposing the lie and liars who tell you Autism is not caused by Vaccine is a good start.
It's time to wake America up. It's all about money and you can't rely on the cowardly media to even point people to the right information so it's up to site like AOA and others to stay the course and be united and on the same message: Vaccine cause Autism, Vaccine don't work, Vaccine are causing mutation in the gene pool of humanity, Vaccines KILL.
Posted by: Danchi | October 25, 2015 at 11:08 AM
How far can Sesame Street go? Will we see the broken furniture, the holes in the walls, the smashed toys, etc.? . . . and how would this be dealt with - consequences, when the person has not grasped the concept of consequences? Then deeper on the dark side are the black eyes, the broken noses and bite marks on the parents or caregivers. Or perhaps the escape from the house running naked through town, or jumping into a stranger's car for a car ride. These things are very real for some of us and I really don't think any of these would be considered suitable to be shown on Sesame Street. So once again I'm not holding out much hope for anything other than a cursory look at higher functioning children.
If PBS really wanted to show the true depth of the issue they should really be going for something on Masterpiece Theatre rather than Sesame Street.
Posted by: Peter Miles | October 25, 2015 at 09:54 AM
Great article! I saw a link from the Sesame Street stuff that interviewed a family with twins on the spectrum. The main thing they emphasized was how happy the children and the family were. Happy and just a bit different. That is not what autism looks like in my house. My son's main defining characteristic. Is how unhappy he is. When he was a preschooler I could not have teenagers babysit for him because they would be traumatized by his behavior. I have been traumatized by watching him. I do not know how Sesame Street could show a child like mine with such bad screaming and self-injury and bad behavior without scaring its preschool audience very badly. My son is a wonderful soul with a good heart but a lot of physical discomfort in his body. I want acceptance for him but more desperately I want his physical problems to go away. Biomed does great for some kids but some kids are so sensitive ... My son responded to half the supplements we gave him with severe headbanging. I wish there was more biomed research on severe older children. I am tired of only seeing Aspergers and high-functioning autism depicted in the media. It is working quite well to bring about acceptance but as a mother of a child who screams all the time and desperately wants to feel better it doesn't do much. Maybe if people saw some depictions of medical autism and were made AWARE of its link to gut issues, etc. they would give money to research that would bring us to a cure (ooh I used a bad word, didn't I?) so that we could bring an end to our kids' pain.
Posted by: AutismGoAway | October 25, 2015 at 09:53 AM
Angus,
You have my respect and support. And a few tears too. Praying that your group has an impact to secure the services and care your children need.
Cathy
Posted by: Cathy Jameson | October 25, 2015 at 09:48 AM
I love Sesame Street. As long as they show severe autism as well as quirky quiet smart kids they can influence some folks. The epidemic is taking over schools. Most everyone is "aware" of autism by now. Sesame Street highlights disabilities. Always has promoted friendship. I've Got A Chair was a song in the 70s about a boy in a wheelchair. Linda Bove was a hearing impaired character. Autism has grown so much they now need to address the problem. That's the real take away here. The raging epidemic. I think Sesame Street is targeting low hanging fruit. Little kids are accepting because the gaps are not too too huge. By 5th grade that changes dramatically. By 8th grade? A chasm. By 12th? No connection except a smile and nod. Adulthood? God help us.
Posted by: Stagmom | October 25, 2015 at 09:22 AM
Very true Cathy, I attended a demo at our local council offices organised by locals, who are stressed beyond belief concerning more cuts in support for classroom assistants,etc.For these very sick children the classroom assistants are paramount to attend school ..a live stream in Geoffrey and me at 11.26 in but this is the real face of autism, leukaemia, that Goverments around the world never want to pay for..SHAME ON THEM!!
https://www.youtube.com/watch?v=fC5DNVFJu-U&list=PLD6C82208D65CE4F8&index=10
MMR RIP
Posted by: Angus Files | October 25, 2015 at 07:24 AM