Statement from the Autistic Self-Advocacy Network
I personally donāt think that the legal-punitive system can be part of the answer to any of the problems here, and disagree with those parts of the networkās statement.
I do think that news/media portrayals of autism endanger autistic people, and contribute to abuse and abusive therapies, when better portrayals might contribute to inclusion and practical solutions to the problems autistic people and our friends families and/or caregivers can face.
The challenge is to care for a fully grown adult in a civilized and humane way, who, depending on where they are in the autism spectrum, may prove to be a handful for a fully staffed and trained care facility, let alone parents with limited resources. It doesnāt sound like the autistic twins in the report would be capable of making any statements to the press.
Iāve seen all sorts of abuse aimed at folks that are dependent on others because I used to be a nurse. What I hate is that caregivers are given a caveat or pass on their abuse because caring for folks with mental illness, physical needs, or developmental delays is āhardā.
There is absolutely nothing about locking two adult men with autism in a basement with no furniture, or light, or access to a bathroom that is excusable. Itās abuse, and the argument that itās the āleast bad optionā is ridiculous.
Sympathy does not necessarily excuse.
However several elements seem rather more reasonable than your statement makes them sound, assuming facts as stated in the report.
1 putting a person in a room without lights at night is very different than putting them there always.
2 if a person will not use a bathroom access to a bathroom is unimportant.
3 locking a person up at night is not entirely unreasonable if it keeps them safer. Its not ideal, but this family has not seen ideal in decades.
It seems obvious that these people have failed their sons in important ways, however we as a society have failed all four. And now we will pay attention to two of them n the only way we seem willing: Prison.
I have a similar situation with my 17yo daughter. She is not autistic, but she will be incapable of ever living on her own.
The parents obviously canāt take care of the two adult twinsā¦they should have been in a group home or some similar arrangement long ago.
It is difficult at times, but you canāt delude yourself that just because they are your children that you are always going to be the person who is best suited to take care of them.
A parent wouldnāt expect they will always be caring for a non-autistic child, so Iām not sure why they would expect that theyāll always be able to carry for an autistic or otherwise developmentally challenged child.
Hereās another similar case only with a minor child that ended in tragedy:
When I was in college I covered a murder trial for a college newspaper in which a mentally ill young man stabbed to his female social worker who was giving him a ride to an appointment (she worked at his group home).
On the stand, the mentally ill manās mother testified at length about how her son went from being a happy child to threatening her, attempting to set her bed on fire while she slept, constantly threatening her with knives, etc., and how difficult it was to get any help.
They might believe that the system would treat them worse. There is some precedent of poor treatment of mentally disabled blacks.
This is one of the unsung reasons that the PPACA (yep, Obamacare) was actually really an important piece of legislation. With the ACA, the U.S. has - for the first time in our history - parity for mental illness. That means that people who have mental disorders may actually get the continued treatment they need as they reach adulthood. Parity requires that insurance companies recognize mental disorders as valid medical claims just as they do physical disorders. They arenāt allowed to ignore them.
Prior to this change, people would lose coverage as they became adults and fell off their parentās plans. Mental disabilities with little chance of recovery, and a lifetime of assistance needed, would block people from better insurance. Then, on minimal insurance plans, only their physical wellbeing might be looked after. With parity, there is a hope that we may see a change in how families at many economic levels may cope with aging children as they grow beyond their parentsā care - simply because they may actually have better choices open to them. Itāll take a few years to find out.
Thereās a real chance that they tried to get help and were denied. Never underestimate how underfunded, incompetent, and simply malevolent U.S. aid programs can be.
The way they treated these kids* is unacceptable, absolutely. The stress of dealing with an unbearable situation without appropriate resources, for years and years, twists a person until this kind of shit seems reasonable. The parents are responsible for what they did, but if proper care had been available it might never have come to this.
*Seems an appropriate word for someone with the mind of an infant, regardless of age.
I have an adult stepson from my previous marriage who is very low functioning. He has autistic behaviors, though his several other diagnosis preclude him from ever being classified officially as autistic.
He has lived in a home since he was five and I used to be a part of his team that would help to decide his care as well as around his home and the people who lived there.
When he was younger, I didnāt appreciate all that his home did for him - really what was the point, he was so low functioning? It wasnāt until he was in his teens and some new kids appeared in his classes and his home that had never been in a school environment that I started to understand how valuable the care he had gotten had been. I met, for example, a teenage girl, blind and nonverbal, whose parents had cuddled her a great deal, never thinking that having a teenage girl who hopped on peopleās laps might not be the situation they wanted to groom her for. I saw another girl, confined to a wheelchair, coming to school for the first time with no idea how to behave in a classroom and no ability to receive instruction. Whereas, with my stepson, he grew from a loveable young man into a manageable and pleasant adult whose care team made sure he was not overfed, that he would no longer have to be physically manipulated to get dressed but could do it himself by the time he was too big to be dressed by someone else. And so on.
Every year theyād close the home down at Christmas time to give the staff a break and heād come to our home. It was tremendously isolating (no one would visit us or help us) and tremendously stressful to have him just for those few days, even after he was potty trained (at age 10 - but still needed a diaper at night).
A lot of people with special needs kids get so caught up in the day to day that they forget about what kind of adult they need their child to be. People really need help - these people obviously mistreated their children and donāt get a pass for not finding the help they needed, but I agree that getting more help for this family is the way to go unless it really is determined that the parents were totally heartless in their care.
While this seems horrible, the āleast badā option is what most people are left with. There is a criminal shortage of resources available for adult Autistics and very little inclination to get those services to the people who need them. (The system is overburdened enough without seeking more people) My sonās been on a waiting list for a group home since heās been 12. Weāre hoping he might be able to be placed sometime before heās 30.
While I appreciate your individual experience and cannot dismiss the value of socialization and instruction that may come from group care, I would caution against thinking that because your stepson turned out well because of the care you and other family members gave, or that others who donāt fare as well are doing something wrong because they donāt do what you did. Every child is different, and Iām sure that those with developmental issues respond very differently. Another thing to remember is that not all group care is of the same quality - for those who have he resources to find and pay for good homes, the level of care is substantially higher than for those with more limited means.
Yes, absolutely. What made the difference was that there was a whole team of people working to assess his goals from year to year and changing those up as he grew. He is one of the most needy kids as far as level of care and there is no way it would have worked for him without that level of involvement. Thatās definitely not everyoneās experience.
Care changes from state to state. One of the reasons he was kept in the state he was (NC) was because he qualified for 24/7/365 care there and many other states tie care to the school system. So, YES, every state is not offering the round the clock care some kids need, or have really terrible homes. We were so so fortunate to have that care available for him. And often adults donāt have care options that children do. People should know that many states leave parents without a lot of options for help.
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