At Rise, we have heard from a number of parents who told us that child protective workers had mistaken signs and symptoms of autism
in their children for abuse and neglect. Children with autism show a wide range of behaviors, but what’s true for most autistic children is that they have difficulty with social interactions and with new experiences, and they often become very stressed in unfamiliar situations, sometimes to the point of hurting themselves. Autistic children also often have difficulties communicating; some can’t talk at all. The parents we spoke to told us that when child protective workers didn’t understand autism, they sometimes blamed parents for their child’s difficulties.
We spoke with Scott Badesch, the president of the Autism Society, to better understand autism, to find out why these kinds of errors in judgment might occur, and to learn what child protective workers can do to better understand the signs and symptoms of autism.
Q: Can you give a sense of how well child welfare workers understand autism?
A: What we’re seeing not only among social service workers, but also among medical professionals, police and other groups, is that there is not the extent of knowledge of autism as there needs to be.
Q: What are some critical misunderstandings that might occur if a child protective worker is only looking for abuse and neglect but is not familiar with autism?
A: There are many.
Sometimes kids with autism hit themselves or scratch themselves. The marks on their bodies may be self-inflicted. But when the investigator asks: “Why do you have those scratch marks?” the child with autism may not be able to explain it. Then you’re dealing with a situation where it’s only the parent saying: “This is what my child does.” It’s a very difficult situation.
People on the autism spectrum sometimes tell people things they think they want to hear. An investigator may ask: “Is your mother doing this?” and the child says yes when in fact the mother is not.
There’s also a big issue with kids being restrained. If it’s not done properly it can seem like abuse. And sometimes the way a child with autism is behaving may make neighbors think the child is being abused. We had a conference last week and someone described a situation in which a child with autism was having a very difficult time, screaming, crying, and being aggressive. The mother was hugging her child, trying to give that child comfort. But the neighbors didn’t understand and they thought something was going on.
If an investigator comes into a house to do a review, but the parent knows that letting the investigator talk to the child may cause that child to become very anxious and lose control—especially if the investigator doesn’t know how to talk to a child with autism—the parent may decide not to let the investigator see the child. This can send the signal to the investigator that maybe the parent is hiding something.
Child protective workers aren’t the only professionals that encounter this challenge. We have a project working with the police that we started because we believe people with autism are sitting in jail because of the way their actions were misinterpreted by responded the police.
For instance, people with autism sometimes don’t want to be touched. If a police officer pulls a person with autism aside to frisk them, the interaction can cause him to react aggressively or to become verbally abusive. Or the police may approach a person with autism and say, “Can you tell me what you are doing here?” and the person may not say anything.
We set up a program called Safe and Sound that trains local police departments how best to deal with these kinds of interactions. If a police officer is talking to a person and that person is not looking the police officer in the eye, the police officer would understand that that lack of socialization might suggest a person with autism. Once police understand the signs of autism, they can interact in a way that is more responsive.
Q: What can agencies do to help child protective investigators better understand these situations?
A: Child protective organizations can partner with their local chapters of the Autism Society or with other groups that specialize in autism and have people come in to talk about autism. If an investigator can go into a home and say, “I understand autism,” that can help reduce the parent’s stress rather than setting them up for a confrontation.
States can also prioritize training about disabilities and can hire people who specialize in disabilities. In some areas, when police interact with someone they believe may be autistic, they have to call the sergeant or lieutenant to handle the situation. Child protective workers could be required to say, “If I believe this individual may have autism, let me call in the specialist who is more trained than I am.”
Another thing we need to do as a society is to recognize the tremendous stress on a family when there’s a child with a disability. We had a father call us who was thinking of giving his child up for adoption. He loved his child, but he was at risk of losing his job because he had taken so much time off from work to take the child to medical appointments, and he also had a wife and two other kids and he didn’t know how to manage it. We talked him through it. We said, “We’ll get you help.”
Sometimes children with autism do get abused, and we need to protect those children. But we also have to have support for parents so they are able to deal with their stress, and we need to know that at times of great stress sometimes people react differently than at times that are not so stressful. Especially low-income parents raising children with disabilities don’t get the resources they need and don’t get the support they need.
One last thing for child welfare agencies to think about before placing a child with autism in foster care is that the average kid in foster care moves eight or nine times before he reaches 18. People with autism like routines, and when you take someone out of his home, you violate that routine. That’s not easy for a person with autism to adjust to.
Q: Once a parent is the subject of a child protective investigation, what should a parent do?
A: The first thing to do is to demonstrate that your child has a diagnosis of autism. Then you need to explain the situation as honestly as you can. You can also bring in doctors, therapists, and social workers who understand autism to explain it. Unfortunately child protection is the one area of the law where you’re assumed guilty until you’re proven innocent, and the burden of proof rests on parents.
When you’re a parent of a child with autism you tend to find that there are so many obstacles trying to get services from your local government and dealing with school districts that you almost begin to get programmed that this is going to be just another confrontation. But when you’re dealing with a child protective investigation, it’s important to remember that it’s not in your or your children’s best interest if it becomes a confrontational situation.
Ultimately, though, I’d say it shouldn’t have to be the responsibility of parents to teach investigators about autism. I believe it’s the responsibility of agencies like ours to help educate those workers.
Q: If children with autism are put into care, how can parents advocate that their children are placed in an appropriate setting?
A: The problem is that when we put children into the foster care system, the same supports that the parents were not able to get for their children are often not readily available once the child goes into foster care either. If those supports were available the parents likely would have been using them.
If a child with autism is placed in the foster care system, parents should advocate for a placement where the foster parent or staff understand autism. Children in foster care often aren’t placed in the same school that they had been attending before, but if a child with autism has been in treatment or in a school that is helping that child, parents should advocate that those services continue.
If the child is placed in a group home, there are some group homes that are very appropriate and some that are not. Unfortunately, since we don’t have an overabundance of group homes, usually it’s a question of which bed is available and it’s hard to guarantee that the child will be placed in an appropriate setting.