What Will Happen To My Autistic Children After I Die?

[TW: Death, ABA, trauma, autism cure, prevention, and more.]

What will happen to my Autistic children, now adults, after I die? I’ll be 50 this year and still don’t have an answer that doesn’t include poverty, despair, abuse, homelessness and an early death.

This question has haunted me for years because the answer isn’t a mystery. If I was already gone today, my Autistic children would suffer greatly the rest of their shortened lives. I used to take comfort in the idea their father and I had some time yet to figure this all out. I took solace in the network of support that I’d built around the children, and I was so incredibly grateful for this village when I became disabled in 2010. The support network created worked. It hasn’t been easy, but it’s worked.

This past May though, everything unexpectedly changed. The cushion of time I thought we had to figure out how to secure our sons’ futures while they aged was abruptly gone. My children’s father died. He was barely 52. It’s been four months and I’m still in shock. One of our last conversations centered on our worry for Mom – his mother via birth, and mine too after I met her when I was 18. Mom hadn’t been well and almost died twice in the months before May, and then on Easter, she fell down during the egg hunt and shattered her wrist.

During that talk, their dad and I also traded concerns about our oldest son, who’d been home and and isolated for the past two years recovering from massive amount of trauma he experienced in his work program. Never could we have fathomed, or even wildly guessed in a game of ‘what if’, that it would be him, their dad, we were mourning for the next month. It was his death that was impending, and we were all wholly unprepared for it.

I wish my prediction for my children’s future was a dramatic and apocalyptic feeling anchored in a worst-case scenario that I could brush off as being overprotective – but it’s not. The future I fear for my children is already a reality being lived by many Autistics around the world right now. It’s a future that my children would already have been living if it weren’t for the support of our family after I became disabled over a decade ago. It’s a future I fear for them far more greatly now their dad is gone. With my health complications, I always believed he’d far outlive me.

In 2010, I was diagnosed as having Functional Neurological Disorder (FND) triggered by PTSD … or something like that. My life as I knew it was over, and I became dependent on the support of a caregiver. At the time my disability was triggered, I was being aggressively treated for Rheumatoid Arthritis (RA) with Enbrel and other medications. I’d taken the weekly injection for a couple of months and insisted for some years that my demise was linked to it.

Repeatedly, I was told by my doctors that Enbrel would not cause the devastation on my body and mind that I was experiencing. I was told that I needed to accept the fact I had a severe mental illness. (This part always confused me. I accepted that I had PTSD when I was young, long before, and I didn’t reject the FND diagnosis. I did believe they were still missing the full picture.) I didn’t believe doctors’ reassurances on the medication and refused to take it, or any other medication for RA again.

It’s only been this past year that I’ve discovered I don’t have RA, and I never did. I was misdiagnosed, and actually have Ehlers Danlos Syndrome (EDS). So that means I was treated aggressively for a condition that I didn’t have.

(Note: If you’re Autistic, please be aware this is not uncommon misdiagnosis for us, and the consequences of being misdiagnosed and treated can be severe and maybe even deadly.)

So what now?

So for the love of all things in the Universe, what do we do now? It’s been four months and I’m still processing the shock and loss of his death on a personal level. My main focus has been on our children, mourning their loss with them, and trying to figure out: What do we do now?

This village of support for my children, it’s vanishing. The people who created the framework are leaving us far earlier than I ever anticipated. The kids are now 29, 18 and 13. My oldest two are Autistic, and my youngest is divergent, but not Autistic. I never anticipated this being our reality when they were babies. I didn’t expect to be considered severely disabled and unable to work since 2010. I didn’t expect to lose my house. I didn’t expect that the long-term disability through work wouldn’t apply for my lifetime, and it would instead cut out after two years because they deemed my condition to be a mental illness, not a physical disability. I never anticipated wiping out everything I ever worked for, including my 401k, before the kids were even fully grown – and I certainly never expected their father to die so young.

So what now?

Right now, I have a 29-year-old Autistic son that has been repeatedly traumatized by the programs, people and support systems that were supposed to help him. He’s a regional center client and he can’t escape Applied Behavioral Analysis (ABA) with their supports. It’s intertwined in the culture, attitude and goals for him. He’s been harmed by people’s ignorance on autism and their subversive use of ABA, without consent mind you, over and over again.

After the trauma of high school, it took five years for my son to brave the world outside of his room again. In all this time, he didn’t qualify for social security income (SSI). When he finally got the courage up to try again, he was placed in a work program that paid a small fraction of the typical hourly wage. He did the same work non-disabled adults would’ve accomplished. I’m not sure how this set-up doesn’t qualify as human trafficking, but apparently it’s legal. Worse the work culture was toxic and caused great stress and struggle for my son.

The accommodations put in place for his disabilities, and took a meeting with me to implement (I did this at my sons’ request, the employees there were fighting implementing accommodations the whole way and with an attitude) were phased out as he was able to accomplish his tasks better. When they removed his accommodations and he wasn’t able to complete the job as successfully (or with a far more manageable sensory exposure and stress levels) they blamed him for the failure. What other disability do they provide accommodations and then decide you don’t need them anymore and take them away? These goals weren’t based on his needs – but theirs. This is ABA.

My son didn’t fail, his work program with ARC did. My son’s career of two years ended with an ambulance ride to the hospital from his job site due to sensory overexposure and extreme stress. He never went back. It’s only now after two years he’s trying again, but this time through the Department of Rehabilitation and with one of their non-ABA work-related support programs. The regional center continues to fail him.

So what now?

My youngest Autistic son graduated high school this year, about a week after his father’s death. He is the first in our family to have achieved this goal. His dad, brother and I didn’t leave public education with a diploma. (I went back later through adult school, tested out and received my diploma at age 25.) He was dropped from regional services when he was still a young student, and I have no idea if he would qualify for SSI at this point.

With my youngest son, I know now to avoid any program that is geared to Autistics through regional centers, schools and autism programs affiliated with California state. All of them are structured with ABA – either formally or informally – and it can’t be escaped. It’s bad enough ABA was included and couldn’t be excluded in elementary, middle and high school. As an adult, I thought it could be excluded fully — but if the word autism is involved in these programs, whether you’re an adult or a child, so is ABA.

So now what?

Right now my youngest son has started getting support through the local independent living center here. They are creating a personal centered plan with his goals for employment at the forefront. I’m so grateful my youngest son didn’t leave the public education system traumatized like his brother.

I believe the strong family support and treating home as our sanctuary has been instrumental in helping him develop a very healthy and good sense of personhood. He’s surrounded by Autistic family members who are hyperaware of the dangers and challenges he’s possibly facing, and helping him to learn to navigate these social situations and relationships with our collective lived experience.

So now what?

I have two other adult autistics in my life that I love and care for very much. One joined our family through marriage and is the wife of my oldest son. The other joined our family as an adult – harmed and used by his biological family. He was my oldest son’s best friend growing up, and has already experienced homelessness, caregiver abuse and worse. He’s had to survive using the systems of support available in our community. When I say surviving, I mean just barely surviving, and most definitely not thriving.

So what now?

I don’t know.

When I hear other parents worry about what happens to their Autistic child after they die, and then promote a popular autism organization, their work and autism research as the answer – I just want bang my head and cry. How can they not understand?

These organizations are not the answer to what happens to your child after you die. They are the reason your child is going to suffer without supports, services and understanding in their community.I’m an Autistic mother of Autistic children and I already know the answer to what happens to my children after I die. It’s not a mystery.

After I die, my Autistic children are going to suffer.

Unfortunately, their fate is similar to most Autistics … unless you’re incredibly privileged parent or loved one (like one of the founders or influential board members of Autism Speaks, Next for Autism, Autism Science Foundation and others) and can set up a special needs trust for their security and well-being throughout their lifespan – your Autistic child is going suffer too.

So what now?

Learning to accept my autistic son | By Eve Reiland

(Originally posted Apr 17 2008 12:00am) My son was born after midnight during the cooler days of May, before the Central Valley could blaze triple-digit temperatures. The delivery room was packed full of people. The doctor, several nurses, my husband, my parents and my mother-in-law were in attendance. As my son emerged into the world,…

Adoptive Families Magazine: Becoming Craig’s Mother, By Eve Reiland

Note: This article started as a journal entry and later became my first published piece. It was printed in the February 2005 Adoptive Families Magazine. My wee baby written about here is going to be 18 next month and graduating high school this year. He’s an incredible and amazing human. In honor of his upcoming…

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