Interviewer: Are you the biggest barrier for your child with autism transitioning into adulthood? We'll examine that next on The Scope.
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Interviewer: Helping any child into adulthood can be challenging and there are special challenges if your child has autism. Court Allred is with the Autism Spectrum Disorder Clinic in Neurobehavior HOME Program at University of Utah Health Care. What are some of the common things that parents of children with autism do that kind of hinder that transition? Are there some common things that you see in your role as a social worker?
Court: Yeah, the two main common that I see is the parent, they're coming to me saying, "My kid never leaves the basement," and when I listen to their story, it's because the parent has given them a debit card, the parent shops for their groceries. The parent doesn't make them do anything and then there's the parent that is pushing too hard, that is unable to see what their child really is capable of because the parent themselves is struggling with anxiety or fear about what's going to happen if their kid doesn't transition quickly or smoothly.
Interviewer: So doing too much or not doing enough. So there's a balancing act here.
Court: There really is and it's so subtle and it's difficult to say. In each individual case I have to, sometimes I'm recommending that they push a little bit and other times, I'm recommending that they stop pushing, that they stop pushing.
Interviewer: Is there any way that a parent can recognize that, or do you really need a third party such as yourself to come in and be able to identify that?
Court: Well if they're pushing too hard the easy, that's the easiest one to identify and that's because there's stress in the home. If they're pushing so hard and they're always fighting and they feel like they can't get their kid to do anything, and lots of tension in the home. The other one, if they're not pushing enough, usually it will be a loved one like a girlfriend or a boyfriend or a grandma or grandpa or aunt saying, "You really should make your son do the dishes. Your son should have a job by now." This parent usually is trying not to push their son too hard, they're overly accommodating and that can come from a background of being abandoned themselves or of really enjoying being a parent and being a caretaker because we take being a caretaker seriously.
Interviewer: This is challenging stuff. I mean, how do you help somebody through that?
Court: What I have to do is first I have to develop a relationship with the parent. That parent has to feel like I understand that their fears, they're based in reality. So once I have a relationship with them, I help them see that what they want is for their child to either transition or to have less tension in the home and so I just get them to see that what their child is capable of might be different than what they want their child to be capable of. Or that they are capable of more than they think they are.
Interviewer: So kind of an expectations thing.
Court: Really it comes down to managing expectations, adjusting expectations, lowering expectations sometimes.
Interviewer: Like some parents think that, they look at things that are too big and celebrate the things that are too big and really sometimes when you have a child with autism, you have to look at those small victories, am I right there?
Court: Yeah, a lot of the parents feel like my kid doesn't have a job, my kid isn't going to college and passing his classes, therefore he's failing. Then with that type of the case, we just say, "You know what, did your kid wake up at a reasonable hour today? Did he do some laundry? Did he do a chore as he agreed upon? Did he send in a job application?" Small steps, we get them to see small things because when they're looking at the big picture in long term, they have a hard time seeing, "Okay what is my child capable of doing right now and can I celebrate that small success?"
With the parent that isn't pushing enough, we have to start getting them to feel like it's okay for their child to be in distress. It's okay for their child to be unhappy and anxious and mad at them. So with that again, it's the small thing like make your kid get up and do the laundry and if he doesn't do that, then it's time to turn off the Internet.
Interviewer: Does the parent have to kind of be the one that's got the big picture in mind? So if the ultimate big objective is to get a job, that the parent has to come up with some small steps to get the child there?
Court: That's tricky because sometimes the kid's expectation is different than the parent's. People with autism, they struggle with seeing the big picture themselves and they don't recognize that what they're doing in the short term isn't facilitating long term. So a lot of them don't have a long term goal or they might say that they do but their daily behavior doesn't match that.
Parents, yeah they have a long-term view and sometimes we have to help them modify that because sometimes they're unrealistic and they feel like their kid will be able to get married one day and have a home and have a job and some of them will have for sure obviously. But sometimes they're going to need a group home setting with support. So then we have to help them modify that expectation as well and what steps to take to move forward in that direction.
Interviewer: I think it's also interesting that individuals with autism, we all kind of know what their limitations are, right, and it's a thing but parents that have issues because they felt abandoned as a child and now they're doing things to their own child, with or without autism, they can be blind to it, right?
Court: Sounds like we're starting to talk about normal parents with no neurotypical kids at this point. Being a parent is hard regardless.
Interviewer: So many parents bring that baggage into any parent-child relationship but it sounds like it's really magnified and can really have bigger effects if you have a child with autism.
Court: Yeah, I guess for me, we should probably not use the word "baggage." We should probably use the word like "issue" or "background."
Interviewer: Fair enough.
Court: Or their own individual path, something like that that's more neutral.
Interviewer: That's good.
Court: Then the other one we need to remember is they are all individual. Too many people that don't understand autism think they're the same, that they all struggle with the same issue, and that's why it's so hard working with autism, it's because each person is an individual with unique attributes and has autism. But yeah, if we can get parents to see that they can work on their own issues. It's not just about their son or daughter overcoming his issues. The parent needs to work on their issues too.
Interviewer: Because it all contributes.
Court: It does.
Interviewer: It all contributes to everybody. It's like a system.
Court: I get emails from parents all the time saying, "My kid didn't wake up when they said they were going to and I just think we're going backwards and what's going to happen in 30 years? I'm going to die?" I'm just like whoa, take a deep breath. In reality, he just didn't do what he said he was going to do and what do we do when people don't do what they say they're going to do? We implement agreed upon consequences. So let's just go back to the plan.
Interviewer: Instead of 30 years in the future.
Court: Yeah.
Interviewer: Yeah. Are there any resources that parents can go to? It really sounds to me like you do need somebody that is an expert in this to kind of help you identify if you're pushing too hard, not hard enough, give you some strategies to help. Are there other resources that a parent could go to?
Court: You know if they take their young adult and they see a specialist, any specialist hopefully will identify what the parent can work on themselves. They can read books. There are self-improvement books. You can look up specific titles like how to manage my anxiety or how to stop being a caretaker. A lot of it sometimes is codependence and there's tons of books on codependence and how to stop doing that.
But as a parent, what we try to get them see is that they need to push themselves as hard as they're trying to push their child. So if they want their child to be flexible with how they manage their time, then they as a parent need to be flexible and celebrating the small steps that their child is doing. They themselves need to see this is just a small little blip, this is just by the time they are a little bit older, things will work themselves out and it's not as scary as they think it is. It doesn't have to mean they're going to fail forever. A lot of it is then just learning to implement the very coping skills we're trying to teach their young adult.
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