Roadblocks toward independence

January 4, 2017 4:06 PM

I've got a 12-year-old girl on the spectrum with a raft of other mental health issues. It's difficult for her to maintain self-control and my wife and I have recently decided to progressively increase the risk of her melting down by not removing what we identify as obvious irritants, or by diffusing potentially upsetting situations. Have you tried this with someone you love with a disability? Can you offer potential avoidable pitfalls or strategies?

She was first diagnosed as being on the spectrum as a five-year-old. About four years ago she was diagnosed with depression and anxiety. She shows some symptoms of manic depression, and was hospitalized for suicidal ideation two years ago. She's on multiple medications for the depression and anxiety, and though they've improved her life siginficantly, she can still have episodes of self-harm and significant depression and anxiety.

She's realtively functional and in an excellent school system with a personal aide and plenty of resources. Her mother and I have decided that it may help with her development to not limit her expereinces and to put her in situations we might normally avoid, or have discussions we might more closely edit. We're doing this in the hope that she might work on her control, and that real world topics and situations could aid in that effort. One of the reasons I'm a proponent of trying this is because both of my brothers had mental disabilities and my mother used a similar strategy with them which led to their indendence. I'd like the same for my daughter but I'm hoping to limit any potential trauma. Any advice from experience?

posted by Stanczyk to Human Relations (19 answers total)

Family therapy to help her prepare for these experiences ahead of time and/or process them after they hapoen.
posted by epj at 4:11 PM on January 4, 2017 [2 favorites]

This is a wonderfully noble idea that should be done under the guidance of a psychiatric professional. Otherwise, you are treading into dangerous territory.
posted by yes I said yes I will Yes at 4:20 PM on January 4, 2017 [7 favorites]

Response by poster: She and we have several therapists. They are aware of our thoughts on this and don't object.
posted by Stanczyk at 4:22 PM on January 4, 2017

As a grown woman on the spectrum that is prone to meltdowns, I can't say I would have been able to internalize my own disability at 12 or even 20 to the extent it takes in order for me to take control of my own emotions in a situation that would trigger a meltdown. If anything, of you force her into situations she can't process or handle, she might not understand why and see it as cruel punishment and become somewhat traumatized, feel bullied by you, and may develop a slew of other mental health, attachment, and trust issues. Spectrum disorders, as you know now, are not just something you can ease out of like a phobia or shyness. It's a literal inability to mentally and physically understand and handle certain environmental stimuli because of too little or too much information. It can get better with age and training, but I also think it takes a level of self-awareness and acceptance for that to even work. It still doesn't for me. So I have to balance what I let myself be exposed to to keep my anxiety from going through the roof.
posted by Young Kullervo at 4:23 PM on January 4, 2017 [26 favorites]

That being said, it might also depend on the situation. I was always fine with most situations except those that required me to deal with complex social interactions.
posted by Young Kullervo at 4:27 PM on January 4, 2017 [2 favorites]

Response by poster: I don't think we're considering forcing meltdowns instead we're thinking more about being less protective. We've been under a bit of a bunker mentality worrying about ever letting her leave the house or trying anything out of her routine. What we're considering is exposing her to the outside world more than just school and the occasional dinner out.
posted by Stanczyk at 5:48 PM on January 4, 2017 [5 favorites]

Is there someone like an occupational therapist in the mix, who can help you all outline a structure of what kinds of situations/stimuli/discomfort your daughter might be A) ready for and B) actually want to get past (or at least, have more control in the face of)? Can maybe help, I dunno, role-play some scenarios with you all? And what are your daughter's thoughts on this?
posted by rtha at 5:59 PM on January 4, 2017

Response by poster: She does have an occupational therapist but that therapist doesn't offer much in the way of behavioral advice. It tends to be more in the practical accommodations vein. No therapist we work with has warned us against this. We know most of her triggers and aren't looking to invoke them, instead we're thinking more about trying to re-engage with the outside world by trying to go in public more. Not crowded or loud places, just out. When your kid hurts herself you listen to that, and we think we understand what it means, but we also wonder if keeping her in the house and being afraid to take her out is really what's best for her in the long run.
posted by Stanczyk at 6:08 PM on January 4, 2017

Thirty+ years ago I worked in group homes for teenagers with a variety of mental health issues and I was a foster mother for teens from the same program. A lot has changed since then but I imagine that the answer to your question is the same now as it was then: you won't know if this will work for your daughter until you try.

You sound like you are on top of her issues and that you have the professional support that you need. Start slow, be flexible, and remember that just because something doesn't work now doesn't mean it won't work next year.

Whatever you decide, best wishes as you go forward.
posted by she's not there at 6:18 PM on January 4, 2017 [9 favorites]

It sounds like you're talking about some version of gradient exposure. I don't have any experience to offer, but some general advice from someone whose kid has a different disability:
Set criteria in advance for when you'll consider the attempt a failure. Stops parental "but maybe we could have given her 5 minutes more" arguments. Make contingency plans.
Remember that just because she did fine doing X today, it doesn't mean she'll do fine tomorrow. And that's okay.
Scrupulously analyze your own motives at ever step. Do you really think she can do X today, or do you just really want her to? Or are you just totally sick of not doing X? These feelings are totally valid and should be recognized.
It sounds like you've totally reshaped your lives for your child, which I get. I wish you courage and success.
posted by arrmatie at 6:25 PM on January 4, 2017 [8 favorites]

In that case, it's definitely not best for her in the long run. If I look back, my mother was overprotective in this way despite my desire to go out and my lack of meltdowns and I resented her for it (then again I didn't have a therapist, she just sort of made that choice herself). I think the only thing I lament for myself is not having someone to officially tell me that I lacked theory of mind, which made social situations very precarious and sometimes very dangerous for me when left to my own devices. I've come out a bit scarred from that, but...I dunno.

What does SHE want to do? Does she want to go out more? Some people on the spectrum are fine never leaving their comfort zones or interacting with others. I know many who function well this way as adults...they hold down jobs, they go out, but they tend to stay at home or only venture out with people or to places they know they can trust not to be unpredictable and spend their time with their hobbies or talents. It may be that her natural inclination is to want to be more adventurous or social (like I did) or she may just not desire it at all. My meltdowns only occurred because I couldn't honestly process what I wanted, which was to be more socially active, so I was forced to retreat into being a homebody for the most part by my disability. This is still the case to this day, and although I DO explore quite often, I tend to limit myself to places that I frequent to those that won't trigger me.

Maybe you can structure the outings around an activity she enjoys? Like a creative workshop? I know that I become anxious around people or in situations where I have nothing constructive to do. Perhaps you could try to integrate her more into places with an older set of people, as I always tended to connect and feel at peace with older individuals and found them less erratic and confusing than children my age.
posted by Young Kullervo at 6:25 PM on January 4, 2017 [3 favorites]

Just know that the second something seems to be trigger free and fine can instantly change without warning and without clear reason, no matter how much time or effort you've put into this experiment. Such is the frustrating nature of the beast.
posted by Young Kullervo at 6:27 PM on January 4, 2017 [3 favorites]

Response by poster: My daughter's thoughts on this are fluid, and we're used to that. And of course they matter but as a parent I may need to encourage her to take risks that she rejects when first asked. I think she gets that and has discovered some pretty cool things because of it, like comics and art. She adores my wife and I and that's probably related to our protectiveness and hopefully our empathy. She tends to be willing to try things and does want what many autistic kids want, connection.

Young Kullervo, thank you for all of your advice. It is very much the kind of perspective I was hoping for.
posted by Stanczyk at 6:39 PM on January 4, 2017 [3 favorites]

In addition to the therapists/ teachers have you talked to your mother about how it worked for her and what she learned to not do? After all, as a child you probably had a limited understanding of how it all went down. She might have a lot of wisdom for you.

I had a friend who did this as a job, basically, working with teenagers on the spectrum and taking them places and working on skills for coping so it's not a crazy off the wall idea or anything.
posted by fshgrl at 7:35 PM on January 4, 2017 [1 favorite]

Have you read this book? I recall them doing something similar, and it having very positive results.
posted by Toddles at 11:28 PM on January 4, 2017

Assuming that you or her therapists have discussed and allowed her to practice coping mechanisms for handling these situations, I'd say it's a good idea.

Do keep in mind that if you try something that doesn't work for her now, that doesn't mean that it won't in a year, or two years, or five years. Keep up the good work!
posted by metasarah at 7:02 AM on January 5, 2017 [2 favorites]

There is a third option and that is helping her find her way around stress points instead of through them.

My oldest is 29. He has gradually gotten more independent. On a good day, he can successfully pull off things that once were impossible. On a bad day, he still opts out, refuses, asks for help, etc.

Adults who have no damning diagnosis get to do things in whatever way works for them and call it personal preference. No big. Helping her find different options for accomplishing the things that need to happen and letting her do it her way can vastly expand her self reliance with much less risk of melt downs.

Better nutrition and some lifestyle changes can also help.

Best.
posted by Michele in California at 11:28 AM on January 5, 2017 [3 favorites]

You mention that she is on the spectrum and I am not going to talk to specifics, but I am an autism specialist and as part of my job I have a blog on ASD.

I have never been able to figure out hyperlinking here so: http://mtautism.opiconnect.org

*Maybe* there is something that could help you? There is a tag for "Aspergers and girls." I would also suggest the book, "Aspergirls" by Rudy Simone. Rudy is living on your continent now and doing workshops.
posted by ITravelMontana at 6:57 PM on January 5, 2017 [1 favorite]

Response by poster: So here's what I learned from this question.

How you frame a question is very important. I didn't do a very good job at that here.

I also very much appreciate the perspectives of those who've gone through this, or something like it. Thank you.
posted by Stanczyk at 2:15 PM on March 8, 2017