Alike But Different
Some people try to tell us that our children’s diagnosis is a gift. They think it’s something we should treasure. Forgetting just how very complex it is, some people try to simplify it. That happens when they say that autism isn’t much more than a different way of thinking.
If only that were really the case.
For many, including for my child, autism is medical. It’s loss of acquired skills. It’s the onset of seizures. It’s problems with the gastrointestinal tract. It’s the inability to speak. It’s cognitive deficits and lack of independence. That kind of autism exists, but mainstream news tends to show only bright and shiny ‘fee good’ autism stories. I love to see those heart-warming stories, but rarely do I get to see ones that represent my son.
Thinking that it may just be a US trend to highlight only happier tales, I looked on some international news pages to see what sort of autism stories they were sharing. While scrolling through a few of the featured stories on the BBC last week, I came across a few ‘feel good’ piece. The title of one caught my eye. The fact that it was medical in nature made me even more curious. The story wasn’t about autism, but I had to find out more.
I much prefer to read my news than watch it, but the accompanying clip was too good to pass up.
Imagine. A devastating diagnosis x 2! With nowhere to turn. With no one able to help. The parents research on their own. Yes, research. It proves promising. It has the potential to help their children. The parents find a team, a TEAM of medical providers to help them. The research, the hard work, the never quit attitude and the unique drug that the parents create yields results – good ones! The girls are improving. They are gaining skills. They have a better quality of life. The family hasn’t found a cure…yet, but everything these parents have done is promising. With the potential to help other children. With the desire to reach other parents. With love, determination and support, the parents have moved mountains. Others recognize that. They reach out to the parents. The parents make themselves available. How very exciting!
So why did I feel a twinge of jealousy as the news story ended?
How many of us have done the exact same thing this pro-active couple did? We’ve done the same level of research. We’ve done the same reaching out to others. We’ve made the same requests to pull the medical community in. We’ve done everything almost exactly the same. And yet if we bring up that our child’s diagnosis, we’re told to merely embrace it.
Our kids are sick.
They are in pain.
They need medical attention.
It would be nice if our children’s disorder, and how it came to be (vaccines), was given the same kind of positive attention this beautiful family was given. But instead of holding our hand and guiding us, we’re rejected. We’re ridiculed. We’re scoffed, pushed away, and ignored. Some parents are even forcibly dismissed. Autism may not be deemed as life-threatening as the twins’ diagnosis is. But our children, just like those gorgeous children, also deserve a chance – a chance to receive appropriate care, to be treated with respect, and to simply shine in a ‘feel good’ news story designed to tug on the heartstrings of the public.
We may not have a platform in the mainstream news, but our families have a platform here and on other websites similar to Age of Autism. But imagine if our stories were sought after and broadcasted like the twins’ story was. Even if only one of our stories was aired on the nightly news, imagine what sort of difference it could make. I don’t see that happening anytime soon. The public’s ready to embrace all that autism includes. The seizures. The self-injurious behaviors. The incontinence. The unintelligible or non-existent speech. If it’s still too much for some medical providers and educators and law makers to handle, how can we ask the general public to process any of it? We can’t.
So what do we do?
We continue to tell our stories. We tell them here and to people we meet. We tell them until we’ve told them to everyone.
While I’m doing that, I’ll be keeping my eye out for news stories that hint that autism is medical. I’ll hope to see upbeat stories about severely affected kids like mine, but since I know I won’t find too many of those just yet, I’ll be happy to see more stories like the twins’ story. It’s an important piece to share, and I do love seeing those kinds of news clips at the end of a long, trying day.
At the end of the day, I want to see something hopeful, happy, and inspiring. Even with the small twinge of jealousy that fell over me when the clip ended, I also felt hopeful, happy and inspired as well. I saw pieces of myself in that video. I saw pieces of Ronan and of our entire family, too. The hard work. The dedication. The commitment. That is us. That is us every single minute of every single day. I wish the family that was featured in the BBC all the best. Truly. Because my goal is exactly theirs – to enhance my child’s quality of life, to bring his health back, and to help other parents in need along the way.
Cathy Jameson is a Contributing Editor for Age of Autism.
Dear Cathy,thanks for this article .
What on earth do the overarching tenticles of the organisational high-ups think they are doing with these [labels] for people managing /coping with Autism?
People first! label as a secondary consideration as part of on-going care planning/ assessment surely?
Cerebral Palsy can be described also as a "Full colour spectrum" condition with a shade range of abilities from a mild condition to life limiting and life threatining profound multipile disabilities/ general health difficulties /learning disabilities /difficulties .
Get Informed! suggest looking at 1913 Mental deficiency Act also How The DSM Developed What You Might Not Know available toread online.
Don't let OPRESSIVE diagnostic language /labels cause a bad atmosphere in your own kitchen ya'll
Chuck them into a cardboard box and firmly shut the lid on them ! Bag Them and Bin Them!
Posted by: Morag | March 21, 2017 at 06:51 AM
Diagnosis of an illness that has no treatment and no cure is almost more of a liability because it means getting labeled. So if the condition isn't too severe it is called something else. I know a 5 year old who is without a doubt on the spectrum. He has so many medical problems including a history of seizures. He is losing his hair. He has emotional problems like meltdowns. But as far as I know he doesn't have a diagnosis. There are probably thousands if not 10s of thousands exactly like he is. As long as he can have something of a normal life he stays off the spectrum diagnosis. This is, of course, tragic in so many ways. Why oh why can't we face the reality of this situation, admit that a horrible medically induced epidemic has taken over so lives, and begin finding what the optimal conditions are for these kids. I'm thinking of this because recently I saw a picture of this boy in a warm climate in a bathing suit. He looked so happy, and his eyes were clear. Then a few weeks later he was in the snow and the faded look was back on his face. What if... what if these aluminum poisoned children are like the Spanish sheep who were also aluminum poisoned, lost their hair, and then eventually died. The trigger was the cold weather. Should children suffering from aluminum poisoning not be exposed to cold? No answer there...
Posted by: kapoore | March 20, 2017 at 02:24 PM
My heart goes out to Your family. Years ago, after recovering from autism and going back into it because a toxic pesticide was sprayed in our home, my daughter who was 19 or 20 at the time, began to bash her head on the unbreakable plexiglass I used to cover the bathroom window, incessantly. I do understand. And I am going to share this again, to see if the Institutes for the Achievement of Human Potential can help You as they did our daughter. They are in Philadelphia and are miracle workers.
The Institutes for the Achievement of Human Potential | Helping ...
https://iahp.org/ Proxy Highlight
Phone: 215.233.2050 | Fax: 215.233.9312 | E-Mail: firstname.lastname@example.org. Copyright © 2017 The Institutes for the Achievement of Human Potential. All Rights ...
And this is for everyone. It was 45 years ago that We began to do this with our daughter, and it was, indded, miraculous. And a lot of hard, hard worthwhile work.
Posted by: Sun~Rose | March 20, 2017 at 10:05 AM
Thank you ladies. You bolstered a fellow soldier in the mom-world of autism. You have no idea how timely and what a blessing your kind words were to read at that moment. It gave me a little strength to Keep Calm and Autism On. Us mom's gotta stick together :)
Posted by: Robyn | March 20, 2017 at 08:18 AM
VACCINES CAUSE AUTISM
Well done Cathy.
I signed the petition as well thanks nocposts.
Thanks for reminding me about the little positive things kws. They have huge meaning too.
Robyn no need to apologize for that beautiful post and God hears all of your prayers and trust me there are a lot people praying the same prayers. He will make a way for all of us.
Debra your post was so loving and tender to Robyn and just to let you know when you have faith in God you are never alone ever. One day we will all hug and recount our victory and I believe that in my heart of hearts.
VACCINES CAUSE AUTISM
Posted by: Willie | March 20, 2017 at 12:13 AM
Good for these parents!
And asking again if there is anyone here who is patterning? Who feed their children vegan? Both were wonderful for us, and no-one here has ever answered me, that I have seen. And my last two posts, did not seem to get posted.
Posted by: Sun~Rose | March 19, 2017 at 10:03 PM
Thank you Cathy, always nice to read your Sunday article.
As most might know, April 2, “Autism Awareness Day” falls on a Sunday this year. The MSM might miss the event entirely this year but I'm not sure.
Not that I care much about all the "blue lights & A Speaks"
but is there any group that could produce a "proper video clip" that could be played at churches that Sunday ? That might be a better audience anyways.
I would suppose it would have to be "somewhat generic" unless the President arrests a number of people at the CDC in a few days.
Posted by: go Trump | March 19, 2017 at 09:30 PM
@ Robyn - I am so sorry about your son. Self-injury is incredibly difficult to live with - it infuriates me that the neurodiversity movement either ignores self-injury or blames the parents. A neurodiversity advocate once told me that my son was self-injurious because he "didn't have a safe place to be autistic." Really. And the media only likes to publish shiny, happy autism stories. And that includes the mainstream media, the alternative media, and most of the Internet. You don't get much honesty about severe autism from the blogosphere either; parents who are honest about the difficulties of severe autism are often attacked in the comments section.
I do hope that things get better for you and your family. We did find things became easier as our son got older; hormones were particularly intense during adolescence. I will hold you in my heart and your son in my prayers. And I that tomorrow is better, and the day after even better.
Posted by: Aimee Doyle | March 19, 2017 at 09:08 PM
Robyn-My son will punch himself in the head over and over when something sets him off like hearing people yelling on television or in a store or even if he thinks we are speaking too loudly at home. I feel your pain as we are also going through the same horrible experience. You are right that we as parents must support each other to get through life raising a child with autism and we could never survive it on our own. May God give us all the strength to continue caring for our children.
Posted by: Gayle | March 19, 2017 at 08:23 PM
Anyone who dares stick up for vaccine injured children will be viciously attacked by media. Money grubbing media scumbags funded by money grubbing corporate scum will stop at nothing to stomp out people like RFK Jr, Robert De Niro, Trump, etc. The media is the enemy of the people make no mistake about it. If they will commit these atrocious hit pieces on great men like RFK Jr. what do you think they would do to all of us? They called him a sex freak because he has been married more than once. They say he has no credibility because of a drug charge from before I was born, I am almost 40 years old. These are the same media scum who piss on conservative values and then turn around with an unrivaled holier than thou rant against people who threaten their sponsors profits. Their hypocrisy knows no bounds.
Posted by: Jeff | March 19, 2017 at 07:05 PM
Yes, there was a GAVI press conference in London to launch a project in 2011 - Bill Gates and David Cameron were at the meeting. And when someone asked what provision would be made for the vaccine injured it was admitted that there would not be any. As we know the real provision is exclusion: driven out into the desert like the biblical scapegoat.
Posted by: John Stone | March 19, 2017 at 06:05 PM
Last night on CSPAN I watched Chelsea Clinton and Devi ? (sorry), address a crowd of people there to listen to a talk on global health. Ms Clinton and Ms Devi (again sorry - Ms Clinton's co-author) just finished a book entitled (seriously) Who Rules the World and Why. These ladies want to tell you that the rulers of the world have everything to do with GAVI, the World Fund, the World Bank, and the WHO ;as to why - well you'll have to buy the book.
I wonder, when it comes to public health, what kind of consideration is give to vaccine injury. My guess is none, because according to Ms Clinton, and the organizations her book represents, it doesn't exist.
Posted by: annie | March 19, 2017 at 04:58 PM
Robyn's post about her son, really touched me. We have a 28 yo with autism and a 15 yo with DS and autism. Our 28 yo has days where we think we are living in a world that we do not recognize. In less one loves a person with autism and lives this day to day, they have no way of "getting it". I wish I knew you as I would give you a big hug and let you know that I /we/my family gets it. Sorry you and your family are so alone. *Peace* Debra
Posted by: Debra Viola | March 19, 2017 at 04:38 PM
I could have written this story verbatim. My son is 14 (soon to be 15) and while of course I love him, I loathe autism and what he and what we have to deal with moment by moment and daily. There's no happy ending that I can see. No sweetie pie message that we should just accept and appreciate his "differences. It's not that he has just chosen to live with his fingers plugging his ears. It's that there is sometimes a constant high pitched sound he can't ignore that looks like it's killing him and it's also that the world is so loud and abusive on a sensory level that he has to block it out. It's not that he's your typical 14 year old and is simply frustrated and angry about everything. It's that he wants to say something but he can't speak. It's not that he has simply chosen to draw with crayons slightly different versions of the opening scene of Blues Clues House every waking moment of his life (if given the freedom to do so) it's that his mind is on a loop all day everyday all year. It's not that he likes the clever animation and storylines of the TV cartoon called Richard Scary's Busytown. It's that, even though he is almost 15 years old, 5'7" and 240lbs, it's that he has the mind of an 18 month old. It's not that he was born with that nose that resembles the nose of a man who has been boxing professionally his entire life. It's that his easily triggered anger and frustration over what we think is. Itching but must be everything to him causes him to punch himself over and over very hard in his nose. We have no help from family, community or the government. Thank God my husband and I have each other. If we were ever going to separate for whatever petty reasons people sometimes do over the last 15 years with our neither one of us said it out loud but we know that instead we are choosing to cling to each other because both of us knows the other could NEVER do this alone.
Sorry about this stream of consciousness but we had a very bad day yesterday. But anyway we cling to each other and we cling to our faith that God has a purpose and we carry on in trying to find ways to make him have a better life experience than he experiences today. So sorry about the vent. Thank you for listening :)
Posted by: Robyn | March 19, 2017 at 12:07 PM
Once again you highlight how the autism community has been hung out to dry by public health (also with the enthusiastic, shameful and craven assistance of the BBC).
Posted by: John Stone | March 19, 2017 at 10:58 AM
I signed the petition. thanks
The feel good stories I see on the Pfizer Channel get to me. They're filtered, cleansed, packaged and doled out like shiny beads at a birthday party.
My close relatives tell me "he looks normal to me". I guess they don't realize he's blind in one eye and can't eat 99% of the foods at Ralphs.
My friends tell me "he'll grow out of it". Really ? Its been 12 years and I'm waiting, hoping.
Realizing that Merck screwed us for 300 dollars in revenue and the person I trusted to take care of my son poisoned him.
On a good note, while he can't play basketball like I did, he can watch the NCAAs with me and side with the Cinderella's. Have a wonderful day sports fans
Posted by: kws | March 19, 2017 at 10:42 AM
So beautifully written, Cathy. Yes, many parents feel exactly as you have described, and we tell our stories to family and friends, who continue to spread the word.
We need to rise up and one way is to show some strong numbers on this petition. I do not know who started this one, but it needs to be promoted more strongly. We have exceeded 100,000 signatures in the past and need to do the same by March 31.
Please remember to sign, then watch for the email, and verify the email address. The signature will not count unless the email is verified. Next, spread the word to every family member and friend you know and ask them to do the same. Otherwise, the petition will appear like any other run-of-the-mill, nice gesture.
Posted by: nocposts | March 19, 2017 at 09:07 AM