Category Archives: Parenting Autistic Children with Love and Acceptance
The Judge Rotenberg Center is a residential school for children and adults with intellectual and developmental disabilities that is located in Canton Massachusetts. The JRC uses behavioral interventions and ABA (Applied Behavior Analysis) to manipulate and control their students. These interventions include aversives, punishments and continued use of electric shock devices. These electric shock devices have been determined as torture by the United Nations. The JRC calls this abuse “therapy” when done to disabled people.
The abuse of disabled people at the JRC has resulted in numerous deaths and in overwhelming pain and trauma for it’s survivors.* Parenting Autistic Children With Love & Acceptance as an organization and community condemns the continued torture of disabled people at the Judge Rotenberg Center.
Please sign and share the petition demanding the FDA end abusive electric shocks on disabled people: https://www.change.org/p/scott-gottlieb-fda-end-abusive-electric-shocks-on-autistic-disabled-people-for-behaviour-modification?recruiter=22005737&utm_source=share_petition&utm_medium=facebook&utm_campaign=autopublish&utm_term=share_petition
PACLA is a grassroots, national organization by autistic adults, autistic parents and non autistic parents of autistic children. Our goal is to connect parents to information about respectful parenting of autistic children and ways that they can engage with their communities to create a more inclusive, just and accepting world for autistic people.
We are so excited to share this great resource from Long Island, NY. Thanks so much to Carrie, the founder of Neurodiversity & Parenting Library of Long Island for taking the time to answer our questions! You can visit their Facebook page here. You can also check out Carrie’s other Facebook page Neurodiversity + Parenting.
Can you introduce and tell us a little about yourself?
I’m Carrie. I live in New York with my husband and our two children. Before children entered our family, I was a public school teacher. I have degrees in English and English Education. Now I’m a full-time homeschooling mom.
How are you connected to autism & the neurodiversity movement?
I discovered the neurodiversity paradigm and Neurodiversity Movement through Nick Walker’s blog, neurocosmopolitanism.com. I was looking for information to help me better understand and support my child, who has since been identified as autistic.
I was disappointed and discouraged by many of the conventional “autism support” groups and pages I found. I felt so much better once I found neurodivergent writers speaking the language of acceptance. Listening to autistic people changed our family’s life for the better. And, in the process of listening, I discovered that I am neurodivergent, too.
Civil rights and social justice have always been important to me, so I was very drawn to the words of autistic activists, and others in the Neurodivesity Movement. For parenting support, I found and still love the Respectfully Connected blog, and draw a lot of strength and encouragement from their words.
I now admin the Facebook page, Neurodiversity + Parenting, curate the lending library, and admin a local group for families looking for respectful support and education from within the neurodiversity paradigm.
What thing or things motivated you to want to start a library in your community?
I was frustrated that my local library didn’t carry many books about autism that were written by actually autistic people. The new book request process was cumbersome, and my first request, for “The Real Experts,” was denied because no other local library had purchased it yet. That experience, combined with wanting to share the books I bought with the members of my local group motivated me to get a library organized. I was also inspired by the Ed Wiley Autism Acceptance Library, by Erin Human’s Little Free Neurodiversity Library Facebook pages.
What goals do you have for your library?
I want to make these texts available for individuals and families who may only have had access to more conventional, pathologizing books about neurodivergence. I want to help others find, as I have, that there is more value in reading the words of actually neurodivergent people.
I also want to model the idea that gentle and respectful parenting can support neurodivergent children as well as neurotypical children. My library includes parenting books that promote gentle parenting for ALL children.
How can people support this project?
Right now our library’s collection consists of books and DVDs from my own personal collection, as well as several donated by friends, family, and members of my local group. We’ve also received some donations from the Autism Women’s Network. People can support us by sharing our Facebook page, and by donating new or used books for us to add to our collection. We maintain an Amazon wishlist at http://a.co/5qXJSxo
How will you run the library? (space, dates, etc.)
Right now the library is organized online, with our Facebook page. I figure out how to get materials out, and returned, with each individual borrower. I’m hoping to set up a browsing/lending event sometime in the future.
What has the response been from your community and others?
The response has been encouraging! Many of the parents in my local group have borrowed books from the collection, and now, with the public Facebook page, it’s been easier for others to learn about titles and collections they might otherwise not have known existed. I’ve also received wonderful support from other “neurodiversity librarians.”
Is there anything else you’d like us to know or want to share?
A nice and somewhat unexpected result of having this library, is that local individuals have gone on to request their public libraries order some of the titles in our collection, and some of those libraries have gone ahead and acquired the books! I know that “All the Weight of Our Dreams” and “What Every Autistic Girl Wishes Her Parents Knew” are now available from two local public libraries. That has been a wonderful thing to see happening!
By Amy Sequenzia
Alex, Autistic Teen, Victim of Hate
All the trigger warnings.
Alex Spourdalakis was 14 years old.
He was Autistic.
He was murdered by his mother.
He was murdered by a person who hated him.
Dorothy Spourdalakis will not go to prison.
She murdered her son, she committed a hate crime, but she claims she did not have another option because Alex was in pain. She claims love but her actions show hate.
Dorothy Spourdalakis believes autism is a disease caused by vaccines. She didn’t love Alex because she saw him not as the son she wanted, but as a problem to be fixed, as a burden on her life.
Dorothy Spourdalakis was a member of anti-vaccine, quack treatments, curebie group Age of Autism, and might have used dangerous “treatments” that might have caused Alex a lot of pain.
Dorothy Spourdalakis didn’t love Alex. She hated him.
When she refused services and respite from DCFS, it was hate.
When she refused appropriate medical treatment from doctors in the three hospitals she took Alex to, it was hate.
When she demanded that Alex be treated with dangerous non-medicinal approaches, it was hate.
When she signed authorizations for the hospitals to keep a very distressed Alex in a four-point restraint, it was hate.
When, in an attempt to gain sympathy, she exploited Alex by publicly posting pictures of him semi-naked, it was hate.
When she allowed disgraced, opportunistic former doctor Andrew Wakefield to film semi-naked, distressed Alex for a non-factual, anti-vaxx movie, it was hate.
Dorothy Spourdalakis wants us to believe she loved Alex, but she is not sorry she drugged him, stabbed him four times in the chest, and cut his wrist – almost severing his hand.
She is relieved she survived her “attempted suicide”.
She is relieved she will not spend time in prison.
Dorothy Spourdalakis did not love Alex. She hated him.
If she loved him, she would have asked to be sent to prison, instead of trying to portray herself as a victim.
Dorothy Spourdalakis violently murdered Alex and the “justice” system believes that, when the victim is disabled, no crime is heinous enough.
Alex, your community will not forget you.
Note: what I wrote is based on what Dorothy Spourdalakis posted before she murdered her son, on posts and public actions by her supporters after she murdered Alex, and on Andrew Wakefield’s interviews, posts and claims of “knowledge”.
More from Amy Sequenzia:
We are excited to make our 2016 PACLA Holiday Gift Guide available for download!
You will find jewelry, original art work, writing, designers, crafters and so much more! The autistic people featured in this guide offer unique and beautiful gifts to give and share this holiday season. The best part is that you will be supporting autistic adults with every purchase!
We also have listed worthy organizations that support the autistic community. If you would like to make a holiday donation in someone’s honor to any of these organizations, we can provide a free, printable and personalized high resolution pdf certificate for gift giving with a huge thank you from PACLA! Just provide a receipt (you can block out any private financial information) to email@example.com by December 20th! You can choose one of four styles we have available and we will personalize it for you!
We hope you enjoy the gift guide and use it to help support the autistic community not just during the holidays, but all year long! (link to pdf below)
Parenting Autistic Children With Love & Acceptance are devastated by the news that Sandy Kinnamon, who had been missing since Sunday, was found deceased earlier today near her home in Allen, TX. Sandy was formerly a part of the PACLA team, an advocate, an ally to the autistic community, a friend, and most importantly, a loving mom to her beautiful daughters. Sandy helped to build the PACLA community by advocating for autism acceptance. In her words and in her actions, she was helping to make a better world for autistic people. We have lost a dear friend who was known for her compassion, dedication to her daughters, her sense of humor and generosity. We are overwhelmed with grief for our friend, who has touched so many lives in the autism community. While this is an incredibly sad day for us at PACLA, we find comfort in knowing how much she meant to so many. We were all privileged to know Sandy and call her our friend.
Please share your stories about Sandy at her memorial page:
We are so excited about another neurodiversity lending library! The Little Free Neurodiversity Library serves the community of Omaha, NE and is run by the awesome and multi talented Erin Human.
Image is a blue little free library box with a gray roof filled with multi-colored books. The letters underneath are LFNL.
1.Can you introduce and tell us a little about yourself?
Hello, I’m Erin, cartoonist, blogger, book lover. I’m married with two kids and a cocker spaniel and we live in Omaha. Originally my husband and I are both from the East Coast but we moved to Nebraska in 2006.
2. How are you connected to autism & the neurodiversity movement?
I am autistic and have neurodivergent family members. Since I realized I was autistic I’ve made lots of autistic and otherwise neurodivergent friends too!
3. What thing or things motivated you to want to start a library in your community?
I opened a Little Free Library in 2014 when a PR company reached out to me to promote their campaign on my blog. I love reading and I love sharing books! After following the Ed Wiley Autism Acceptance Library for a while and seeing the idea of a neurodiversity library begin to catch on, it suddenly occurred to me that I could combine the two and make a Little Free Neurodiversity Library.
4. What goals do you have for your library?
The main goal of my library is to educate my community about neurodiversity, autism acceptance, and disability rights. I’d like help some high quality but lesser-known books about neurodiversity and disability, and their authors and editors, to reach a wider audience. And if somehow this could bring together people with a shared interest in neurodversity, even better!
5. How can people support this project?
One way people can support LFNL is to purchase something from my Amazon wish list: http://www.amazon.com/registry/giftlist/LCLMTFOOIKSE
Another thing people can do is to purchase something from my Redbubble store where I sell LFNL shirts, totes, stickers, and more – all of the proceeds from Little Free Library designs will go directly toward purchasing items for the library. And of course, Liking and sharing the Facebook page is much appreciated!
6. How will you run the library? (space, dates, etc.)
The Little Free Neurodiversity Library is run through my official Little Free Library, Charter #11920. The updated catalog can be viewed at http://lfnl.libib.com and anyone who wants to borrow a book can email me at firstname.lastname@example.org to arrange a pickup.
7. What has the response been from your community and others?
The response has been great so far from the neurodiversity community and from other local Little Free Library stewards. And also I’ve had tremendous support from the neurodiversity librarians who came before me. I’ve already received three wonderful donations of books and a DVD. The LFNL is still very new so I’m working on getting the word out to the Omaha community; I’ve got a small but growing catalog so I would love to start lending out these wonderful books!
8. Is there anything else you’d like us to know or want to share?
I’d just like to encourage people to email me if they have any questions about the library, neurodiversity, what books I recommend – or if they want to start a neurodiversity library of their own. I’m happy to help when I can!
Here’s another article about the LFNL: BookRiot
PACLA is excited to reveal our 5th and 6th OWie Awards!
The 5th OWie Award in April goes to:
Image: blue/green certificate with green filigree frame. Top left is stamp of PACLA icon. Bottom of image is watermarked with an arrow shooting through an open window. Green text in multiple fonts reads: Honoring Autonomous Press. In appreciation of your radical activism & shifting the Overton Window toward Autism Acceptance & the Neurodiversity Paradigm. Thank You! Parenting Autistic Children With Love & Acceptance
From the Autonomous Press website:
Autonomous Press (also known as AutPress) is an independent publisher focusing on works about disability, neurodivergence, and the various ways they can intersect with other aspects of identity and lived experience. We are a partnership of disabled workers including writers, poets, artists, musicians, community scholars, and professors. Each partner takes on a share of the work of managing the press and production, and all of our workers are co-owners.
PACLA loves Autonomous Press and if you are the parent of an Autistic child, you should too. The book “The Real Experts” from Autonomous Press , which was also edited by PACLA contributor and moderator Michelle Sutton, is the first book that every parent of a child with a new diagnosis needs to read.
While most books that are geared toward parents of autistic children promote the tragedy and medical models of disability and autism, “The Real Experts” is different. It’s a resource for parents who choose to embrace autism acceptance and who celebrate neurodiversity.
Autonomous Press is pushing the Overton Window and centering the experience and writing of disabled people, who are far too often denied a voice in conversations about us!
Thank you to Autonomous Press and we can’t wait to see what you do next!
Autonomous Press on Facebook
Autonomous Press on Twitter
Our 6th Special Ally OWie award goes to Ink & Daggers Illustration!
Image: blue/green certificate with green filigree frame. Top left is stamp of PACLA icon. Bottom of image is watermarked with an arrow shooting through an open window. Green text in multiple fonts reads: Honoring Ink & Daggers . In appreciation of your radical activism & shifting the Overton Window toward Autism Acceptance & the Neurodiversity Paradigm. Thank You! Parenting Autistic Children With Love & Acceptance
Congratulations and thank you to Ink & Daggers for your activism and for pushing the Overton Window toward acceptance. Even in the face of harsh criticism, Ink & Daggers has held their ground and pushed back against intensive interventions and ABA therapies that harm autistic people.
Through their art, Ink & Daggers celebrates autistic communication, neurodiversity, noncompliance and honoring the stim while also helping to bring attention to therapies that dehumanize and traumatize to show people that there is a better way, based on love, respect and acceptance.
Thank you to Ink & Daggers for your activism as an ally to the autistic community!
Ink & Daggers on Instagram
Ink & Daggers on Facebook
Ink & Daggers on Twitter
Parenting Autistic Children With Love & Acceptance is excited to reveal the fourth OWie Award in April!
Awarded to Autistic Activists who are changing the conversations and shifting the Overton Window toward acceptance!
Image: blue/green certificate with green filigree frame. Top left is stamp of PACLA icon. Bottom of image is watermarked with an arrow shooting through an open window. Green text in multiple fonts reads: Honoring Amy Sequenzia in appreciation of your radical activism & shifting the Overton Window toward Autism Acceptance & the Neurodiversity Paradigm. Thank You! Parenting Autistic Children With Love & Acceptance
Congratulations, Amy Sequenzia!
Amy had the second highest amount of nominations for an OWie award! We love Amy and she is also a part of the PACLA moderating team. In addition to PACLA, Amy writes for Autism Women’s Network, Ollibean and at her blog NonSpeaking Autistic Speaking, and is a leader in the grassroots Boycott Autism Speaks Movement.
From Amy’s bio:
I am a non-speaking Autistic activist, writer and poet. Once said to be less than human, I found my voice and I now make sure I am heard.
I have epilepsy, which sucks and slows me down but does not stop me, and cerebral palsy, which does not suck.
I look and am very disabled but I have self-determination, my thoughts are my own and my words flow from my brain through my fingers to the screen. I need help with the rest.
NeuroQueer, human rights activist, civil rights activist, disabilities rights activist.
Amy is also a published poet. Her young fan, Fallon says this about Amy and her poem “Respect”:
My favorite in the book is “Respect”. One of the reasons I like this book is because the poet has disabilities, like me. For one thing, we are both Autistic. It actually makes me feel good. I guess you could say that we are both pretty smart.
“Respect” teaches what is the name of the poem. Sometimes, she might not feel respected. Sometimes, I feel that way too. I think she knows that she is perfect the way she is. Maybe people without disabilities don’t think that about us sometimes.
An anonymous parent who nominated Amy for the award had this to say:
Her writings really helped me stand up for my daughter in many situations. She really made me re learn everything I had learned about anything. You all have 🙂 but there’s one article that sticks out in my mind that really changed everything for me. She was talking about a sad incident in her life/ but it made me realize the bad info and how I’d fight my hardest for my daughter to get respectful education/therapy and relationships.
But I’m so thankful for her writings. I’m so sorry for the injustices that have been done to her. She’s extremly brave for sharing. I’m nervous just writing this nomination..😬. But long story short/ she woke me up and made me aware.
Thank you, Amy for your work, your writing and your activism that is shifting the window and making a better world for Autistic people every day!
Several days ago, we were alerted to this petition about the outrageous and state sanctioned abuse of a young autistic man in the UK who was being kept from his home, his family and community. Our moderators are largely North American and Australian based, but we wanted to know more about this. As it turned out, our friends in the UK said this is not an uncommon thing to happen to disabled people in crisis in the UK. We wanted to bring attention to this with a guest post on our blog from disability advocate and parent, Mark Neary:
TW: Abuse, institutionalization, ableism
Seven Days of Action by Mark Neary
A few weeks ago, I was invited to join a social media group that had been set up by the relatives of people with learning disabilities that are currently trapped in Assessment & Treatment Units. This issue hits a painful nerve for me because 6 years ago, my son went for 3 three days respite as I was unwell and it took 358 days to get him back home again. Only then and the intervention of a High Court Judge who declared that for the whole year, Steven had been unlawfully detained and his Article 5 & Article 8 Human Rights had been breached.
The families had reached desperation point. All the official channels for challenging the detention remained sealed. We knew that a big push was needed if their sons and daughters were ever to make it back home. Hence, the campaign “7 Days of Action” was started on 18th April 2016. The aim of the campaign is to raise public awareness of the kinds of impoverished lives lived by the learning disabled people in these Units. Ultimately, the aim is to bring pressure to bear on the decision makers and to bring these good people home. They haven’t committed any crime. In most cases, they don’t have a diagnosed mental health condition. They are there because they are learning disabled and the State doesn’t want to fund a life for them in their own homes.
You may be asking, what is an Assessment & Treatment Unit. It’s a good question. One thing is for sure through the evidence of the campaign is that neither assessment, nor treatment takes place there. They are holding pens. Warehouses for people who the State is not prepared to fund home care for. Whilst someone is in an ATU, the cost is normally bore by the NHS. The Local Authority and the Local Clinical Commissioning Groups don’t have to pay a penny. And there is the rub. When it is time for the person to be discharged, neither of the aforementioned groups is in a hurry to pick up the cost of providing the care and the person is left to vegetate in the ATU.
Here are some alarming ATU facts and figures:
As of 30th September 2015 there were exactly 3,000 people in specialist learning disability inpatient services.
According to their care plan, 950 people (32%) do not need inpatient care.
1,300 people (43%) had been in their current service between 1 and 5 years
895 people (30%) had been continuously in these services for 5 years or more
1,225 people (43%) were in an inpatient service more than 50km from their home.
The average weekly cost per person of an ATU placement is £3563
2,155 people (72%) were given antipsychotic medication in the 28 days before the census date.
Seven Days of Action believes that it is important for the human stories behind these figures to be told. So, over the seven days, seven stories will be told and published on the blog each day.
Stories like Eden, who is now entering his 8th year in an ATU. Eden has gained 16 stone in weight in those 8 years due to the heavy doses of anti-psychotic medication he is injected with weekly. He is fed his food through a hatch.
Stories like Robert, who is 250 miles from his home. Even the Responsible Clinician in Robert’s case is supporting his move back home but the Local Authority is not prepared to fund it.
Stories like Tianze, who was moved from Scotland to England. His family moved home to be near him and then the commissioners moved him again. Since being in the ATU, Tianze has started self-harming and he is repeatedly subjected to prone restraint.
Stories like Stephen, who has now been away from home for five years. His family were recently blocked from hiring a respected psychologist to offer a second opinion on Stephen’s care.
Stories like Jack, who regularly gets anxious about his home leave being cancelled, which leads to his home leave being cancelled.
Stories like Chris. 5 years ago a High Court Judge ordered his Local Authority to provide a home care plan for Chris but it took a further five years for Chris to return home.
Stories like Thomas, who died in an ATU in 2015. His mother had made repeated, desperate attempts for the Unit to arrange medical treatment for Thomas. Her calls were ignored and Thomas died.
Where are the Human Rights of these seven guys and the other 2993 people currently detained in Assessment & Treatment Units? It is easy to overlook this when learning disabled people are viewed as not quite human.
Recently, most of the British reported on their front pages the story of a dog that had been held in appalling conditions by its owner for two years.
Eden’s story will probably not make the front pages.
Or you can follow the campaign on Twitter at #7Daysofaction
Thank you for your support.