In loving memory of Alejandro Ripley
We credit the Autistic Self Advocacy Network and its 2020 Anti-Filicide Toolkit for help in creating our position regarding the murders of disabled children at the hands of a parent. We’d also like to thank our friends at the National Council on Severe Autism for providing some of the staggering statistics regarding significant intellectual disabilities.
Read our statement here:
As most of you already know, we live in South Florida. The news of Alejandro’s death has shaken up our community to the core.
In case you aren’t aware, for some odd reason, we are referencing the case of a nine year-old boy in our area, who was drowned by the mother who has now been charged with murder.
Where to even begin?
Why did this happen?
How could a parent do this to his or her own child?
Were there warning signs?
What can be done to help parents who are a danger to their ASD children when they reach this point of desperation?
Who can they reach out to for help, if friends and family aren’t an option?
What can we do to prevent this from ever happening again?
Clearly there’s a lot to unpack.
We’d like to first preface this by saying we are not doctors, not psychologists, not attorneys, nor investigators. This is simply the opinion of two moms with teen children on the autism spectrum.
It’s almost impossible to shed some light on this because it’s such an extreme case of the unimaginable, but we will do our best. This is for our ASD community and even those not in our world to wish to learn more.
FILICIDE is the legal term for the killing of one’s son or daughter.
This isn’t the first time this has happened, unfortunately. It’s happened before even with parents who were overwhelmed with their typical children without any other stressors
According to the Autistic Self-Advocacy Network, in the past five years, over 600 people with disabilities have been murdered by their parents, relatives, or caregivers (“2020 Anti-Filicide Toolkit,” Autistic Self Advocacy Network, https://autisticadvocacy.org/projects/community/mourning/anti-filicide/. Accessed 28 May 2020).
There has been, as one can imagine, endless HEATED conversations on social media over this case. On the one hand, everyone wants to see justice served for this innocent child who suffered greatly. Obviously. Such a needless, cruel, evil thing to do to someone. And even worse, as a mother.
On the other, parents who of course also condemn this, but who also believe she reached the end of her rope with the situation. Her actions were despicable, yes, but not everyone can handle the intensity autism or a disability CAN bring to a family.
And so the community is angry, heartbroken, exasperated, and grieving profusely.
THAT SAID, to blindly wave this away by talking about how WE could never do this is irresponsible.
Would WE ever do this? No. But not everyone has the same life, morals, background, situation, and TOLERANCE. If we IGNORE that the potential is there for others to lose their minds then we are not helping anyone. What good does it do to point a finger at others without offering valuable help to those who need it?
A woman who, by all accounts, was a loving and dedicated mother for years, woke up one day and decided (and insisted) on doing this? Something doesn’t add up. What went terribly wrong?
Which brings us to the big question…what IS it about autism?
Why can it be so hard?
Depends on the individual situation. Again.
It’s just not an excuse. It really isn’t. We cannot cannot cannot excuse this because it’s not OK. It cannot be normalized. But if we are going to make a change, we need to get to the ROOT of the problem. The cause.
Here is some background on possible scenarios that could have potentially TRIGGERED this.
To begin, one pattern we notice lately is the use by ALL autism parents (ourselves included) of the “IT”
“IT is so hard.”
“You don’t understand IT unless you’ve walked in our shoes.”
“IT takes a village.”
Well, what is IT, exactly?
It dawned on us that by continuing the use of IT, outsiders will continue to nod, feel bad that we feel bad but not truly grasp what everyone is so upset about. What. Is. IT?
We know that autism is a spectrum.
We know it affects every single person differently.
Some just a little.
Some a whole lot.
According to the CDC, approximately 1 in 59 children now have autism spectrum disorders.
One-third (31%) of children with autism exhibit a significant intellectual disability, and more than half (56%) of children with autism have significant or borderline intellectual disability. Severely disabling autism, using co-occurring intellectual disability as a proxy, seems to affect 30-50% of the autism population. Looking from the angle of the population that is minimally verbal, it is estimated that 30% of youth with autism fall into that category. Core autism and related symptoms are typically more severe in these minimally verbal individuals, and they often exhibit challenging behaviors (National Council on Severe Autism. www.ncsautism.org/. Accessed 28 May 2020).
What does non-verbal severe autism look like?
Living without the ability to express yourself has to be exasperating. Some children ultimately learn to communicate using sign language, PECS, an augmentative device or a combination of all. Using those methods, some can excel at times. Some even end up writing memoirs and expressing themselves. On the other extreme end, there are the individuals who do not.
Unable to communicate, perhaps express pain or discomfort, severely affected individuals might self-injure by hitting their heads against surfaces, even glass, or even show aggression towards loved ones. They might warrant the use of protective helmets and need to be knowledgeably restrained in order to protect him or herself or others around him (however controversial that may be, rules and guidelines exist for it).
It can begin with a meltdown. When overwhelmed or overstimulated. It’s beyond a toddler tantrum when it’s happening to a 10 or 20 year old.
An individual might bite himself or others. Or punch. Or throw objects. It can be to sensory seek. To communicate. Or who knows what. And whatever that reason is, it’s not the point today. But we need to establish that IT happens.
PERSONAL HYGIENE and SELF STIMULATION
These are tough to talk about, but part of the IT
Proper bathroom hygiene, before and after urine or a stool, like wiping.
These are all things an individual might need assistance with. To use the bathroom, someone might not know how or when to even unclothe himself and do it in public.
The delicate and somewhat taboo topic of masturbation. Imagine a 13 year old who doesn’t understand boundaries and begins innocently doing so in public, at Publix, or at the mall. What could possibly go wrong?
SIGNIFICANT COGNITIVE DELAYS
We have mentioned this often on the podcast.
A teen or adult who still plays with baby toys, watches Baby Einstein, or The Wiggles. It’s not as easy as taking it away and forcing him to watch appropriate material. Some cannot grasp the concept no matter how hard you try to explain or implement it.
An inability to express feelings. Going through a lifetime of not hearing your son or daughter’s voice. It must be excruciating.
It is important to define some of those stressors because every crime seems to involve the most severe. A parent dealing with their autistic child who is off to college soon is not dealing with the same as a parent who is hiding out in their room waiting for their teen’s violent outburst to pass.
Everything mentioned before is only a small part of things those on the severe end of the spectrum and their parents go through. The majority of parents CAN and DO deal with it without resorting to murder. Why can’t others? What is the difference?
The simple truth is that not everyone can cope the same way.
Just using suicide as an example, not everyone committing suicide did so because he or she did not have a support system in place. Love ones are left behind puzzled wondering for eternity WHAT ELSE THEY COULD HAVE DONE. This is unfortunately too similar.
Some parents are more vulnerable than others. A parent may become depressed, feel alone, helpless, unable to cope, perhaps even be on the receiving end of the hitting. A parent can maybe be coping with autism while also dealing with domestic abuse, financial issues, drug use, or even drug side effects, besides all the baggage we humans carry and collect throughout our lives.
Perhaps the cops have had to intervene if a child had extreme self injurious behaviors?
If a child is physically suffering, with self-inflicted lesions and/or bleeding daily, maybe in agony over severe gastrointestinal pain, a parent might want to relieve him of that and feel helpless if they run into a wall with treatment.
Still, should a parent be excused for killing their disabled child? Shouldn’t parents still be treated the same way anyone else who kills does?
We try hard to always find the middle ground, the fair answer, the one where all sides have been exhausted. But although we know what the cause could have MAYBE been, we still can’t offer a pass.
Accidentally watching the video of the first drowning attempt sickened us to no end. This wasn’t a mercy killing. Not the shoving. Not the child screaming and her running away. Not an attempt of it the second time, after she had a chance to change her mind. If she had a temporary mental lapse, I doubt it, but if she did, how do you live with yourself? Do the screams not haunt you? How do you go on living? Has she snapped out of it?
THE SELF ADVOCATING AUTISTIC COMMUNITY
Reading the Anti-Filicide Toolkit by the Autistic Self Advocacy Network has been really helpful.
A little background….this is an organization we don’t generally side with. Mostly because of their failure to INCLUDE those in need of the most support. For example, they insist we consult those “on the spectrum” for their opinion. While we do think that is great and they SHOULD be included, what about the severely affected? How are they all about inclusion, but not include ALL? The million dollar question we always ask. WE talk about those able to be independent, but how often to they reference those who need them the most? How exactly do you consult the opinion of a severe child if he isn’t even able to tell you his very own name, for example?
We have been reading their call to action to not be portrayed as a “burden” to families. My initial knee-jerk reaction is to say we would do anything for my child regardless of what’s needed, so it is not a burden, but IT (there is that IT again) is insanely difficult. By not talking about it, you minimize, downplay, and belittle the hardships.
We do, however, agree with their very helpful key points:
Typically, when a child without a disability is murdered by their parents, everyone stands united in condemnation. No one attempts to understand, justify, or explain the murder. No one expresses sympathy for the murderer. No one argues that every parent has had moments or thoughts like that. No one understands. No one suggests that if the child had been easier or the family had had more support, this could have been avoided. The crime is punished harshly, and the victim is remembered and mourned. When someone with a disability is murdered by their parents, the opposite happens.
On the topic of families not receiving enough services. While it IS true… “Most high-profile cases have occurred in upper-middle-class communities and have been committed by parents who either refused services, or had more family services than is typical. Suggesting that murders could be prevented with more funding holds people with disabilities hostage: give us what we want, or the kid gets it!”
Filicide is not a symptom of mental illness. Filicide indicates a decision to murder. These decisions are deliberate and often premeditated for days or weeks. When we’re talking about cases where people with disabilities are murdered by parents, invoking mental illness is just a way of blaming one group of people with disabilities for the murders of other people with disabilities,and shifting the blame away from the person who is actually responsible – the murderer
(“2020 Anti-Filicide Toolkit,” Autistic Self Advocacy Network, https://autisticadvocacy.org/projects/community/mourning/anti-filicide/. Accessed 28 May 2020).
A DB CALL TO ACTION- we get that some of us are barely at the awareness stage- but ain’t nobody got time for that.
What we are offering here is a lifeline.
A way to put all things into perspective at a time when lines are blurred and it’s hard to see things clearly and by putting emotions aside.
Several local groups have started an aggressive campaign to increase the visibility and access of support groups for parents.
Maybe it’s for a much needed mental break from parenting. You can’t pour from an empty cup, so fill that cup and find the nearest outlet. Anything from a night out, a zoom virtual night in, texting with a friend, ANYTHING that can help you find that breather.
Your needs of a parent might be more intense and immediate. There is talk of a 24/7 hotline for parents with emergency needs. This is a great idea. (talk about the glitter suggestion vs real needs).
Several organizations are bringing back their respite care earlier or creating the program where it did not yet exist.
Change the conversation. Use the victim’s name and not that of the murderer. Don’t normalize a parent killing a child.
Advertise signs to look for (doctors, teachers, therapists). Just like they report potential child abuse, this is NO different.
Partner with Fire & Police- drop offs. Just like you can drop off a baby, something similar could work.
Parent mentors, a buddy system.
STOP PARENT SHAMING and SUGAR-COATING
We need to stop with the parent shaming and sugar coating.
We have discussed this repeatedly on this podcast. And we are committed to discussing the topics as transparently as possible, no matter how tough it is.
If we can agree that autism affects everyone differently, then we can agree that every family has different challenges.
If a parent feels the need to vent about her child’s hardships, it doesn’t mean she doesn’t love him. It doesn’t mean she is enabling behaviors. It means a parent trying to cope as best as he or she can, and can you please for one f’in second just let a parent vent?
NOT ACKNOWLEDGING that it is possible to not have it so easy can cause some parents to withdraw and internalize their stress.
CONCLUSION: Killing is never an answer. No one wins. Please, please, please, please, don’t.
We’d love to hear your thoughts and input. Please reach out to us on any of our social media or via email at firstname.lastname@example.org