Unconditional Parenting and Autism

[Viriditas]

This is a post that I just made to my local UP yahoo group.  I'm posting here as well in hopes that some of you might have some guidance or be able to point me towards some good resources.

I have been lurking on this group for quite awhile, but I don't post. Over the
last few years, my parenting ideals have been all but lost and my relationship
with my son (now 5) has spiraled into frequent manipulation, bribes, rewards,
threats, and bargaining. Now that I'm pregnant with our second child, I'm
starting to really think about what's important and where we need to be as a
family. I need help, but I'm not sure how to get it.

Two years ago I was exasperated, wondering why, regardless of how respectful and
gentle I tried to be, my child was so resistant, unresponsive, and out of
control. As he neared 4 it became more and more difficult to chalk this up to
toddlerhood and we began to suspect ASD. Sure enough, we had him evaluated and
confirmed his hyperlexia and high-functioning autism.

As I began researching autism and parenting, reading books, blogs, websites, and
talking to "professionals," the message was clear. There is no way to parent an
autistic child without using a very clear and stringent set of rules, a strict
schedule, and a system of positive and negative reinforcement. Granted, I knew
better than to accept this outright, but I still thought that my ideal of
parenting without manipulation might be unrealistic in my situation. To date I
still haven't been able to find any information or support for parenting a child
with autism unconditionally.

Whenever there's a problem I don't know how to handle, I have no idea where to
turn. Most parents have absolutely no idea what it's like parenting a child
with autism. But all I seem to hear from the parents of kids with autism is
"sticker charts work wonders," and, "he loves his computer so much, so we dole
out 10-minute sessions for good behavior."

I want to have a genuine, loving, unconditional relationship with my child, but
I need some "been there done that" guidance on how to handle the day-to-day when
every request, transition, attempt at communication seems to result in
resistance, struggle, delay, or anxiety. It's one thing to take a little more
time and come up with creative solutions for occasional roadblocks. But when
they are constant, how does one find the energy? And how do I draw the line
between letting him be who he is and challenging him so he can learn to live in
this world?

I'm hoping some of you might have some insight or know of people who are
successfully parenting kids on the spectrum unconditionally. I need to know
that it's possible and that I can do it.

[bluebackpacks]

Removed.  (Too much personal info.)

Edited by bluebackpacks - 3/31/11 at 5:49pm

[Linda on the move]

Originally Posted by Viriditas 

Now that I'm pregnant with our second child, I'm

starting to really think about what's important and where we need to be as a
family...
 It's one thing to take a little more
time and come up with creative solutions for occasional roadblocks. But when
they are constant, how does one find the energy?

this is what jumps out at me -- you are pregnant and having trouble having enough energy to deal with your child with autism. I was exhausted both times I was pregnant. It just took it out of me. I think that you could talk to your doctor about anything you could take (extra vitamins??) to safely boast energy, but I think that you need to cut yourself some slack and assume that while part of your energy is going into making a whole new person, you're going to have a little less to energy to deal with the challenges of having a kiddo on the spectrum.

Congratulations, BTW.

Second, I threw out all parenting labels years ago. My DD (whose dx when she was little was PPD-NOS, but is now Asperger's)  refused to be parented in any systematic way. Charts and bribes don't work for her, either. We just deal with things, one at a time, gradually figuring out what works for now, and slowly moving forward. Mostly forward, sometimes back. 

I'm a big fan of What Works For Now.

For her, letting her do what she is comfortable with would have resulted in her hiding in her room, deeply afraid of the outside world, and living like a blob. What is called "unconditional parenting" (a term I loath) would be neglectful in her case. I came to this conclusion after trying it and watching her world get smaller and smaller and smaller.

There isn't a parenting technique that you can learn that will make all of this easy (sorry, I wish there were). The biggest key for my DD is keeping her sensory issues under control, so the right sensory diet is the cornerstone of her life. What has been most fun for her has varied at different ages of her life (she's 14). As she moved into childhood, I tried to find *real* activities that worked for her sensory issues, and she became a competitive swimmer. Practicing swimming 2 hours a day, 5 days a week was like intense therapy for her, but she did it on a team, complete with a team swim suit, ribbons and trophies and meets. She was a regular kid, and never thought about it as being something she needed because she was "special." 

School has been a long road for us -- and she currently happily attends a wonderful alternative school. But figuring out the right school was tough.

There are things that I've made my DD do that she didn't want to do, and I feel fine with that. She didn't come wired to be naturally drawn to what was best for her. To me, it's a balance. Using her response as feed back to figure out what works and what doesn't. I pushed her out of her comfort zone because her comfort zone wasn't going to make her happy long term. Actually, it didn't make her happy short term.

The question about how much to let her be herself and how much to push got clearer for me after she turned 13. I feel the fundamental push of the teen years is independence, and I think that's true for a kid with sn or for a typically developing child. So I taught her to do her own laundry, cook her favorite foods, etc. She does community service. She loves to garden and recently took over the primary care of the green house at her school, and I've arranged for her to do an unpaid internship this summer at a commercial green house. I'm not trying to make her neuro-typical, I'm making sure that her life is one that works for her, that it is as big and connected to the world as possible, that she will be able to make real choices when she is an adult.  

May be the question is "am I trying to help my child be the best version of herself" or "am I trying to make her someone she isn't." My kids is always going to be on the spectrum, but I want her to be a happy person on the spectrum doing things she is interested in, bringing her gifts to the world. But, like I said, that is clearer for me now that she is a teen than when she was little.

I recommend you give any idea of what "good" parenting looks like and just love the child you have and try to figure out what will work for him for now. All those parenting books were written by people who had never meet your child, and most of whom have never loved a person with autism. They are a bunch of bs.

[Viriditas]

Thank you both so much for your responses.  It's really nice to hear the perspectives of parents who aren't hyper-focused on making their ASD child as "normal" as possible at whatever cost.  I see so many parents and professionals so focused on an ASD child's behavior that they seem to forget they're dealing with a person, not a problem to be fixed.  

I really do need to just be with my son more and try to understand him better.  Since we found out about my son's autism, I have been either working full-time or working part-time and going to school full-time.  I decided to delay (or possibly abandon) my plans for a master's degree and now I'm just working part-time from home, so I'm going to have a lot more time to be with DS and get to know him better.

My game plan to begin with is to remove as many stressors and obligations from life as possible.  I think once I make everything as simple as I can, I can really start to examine where we are and where I want us to be. 

[rainbringer]

I agree with pps about focusing on what works for your child, rather than whether it fits exactly into unconditional parenting.  I haven't read Alfie Kohn, but I did originally try to avoid praising too much.  What I found is that in practice that meant I was focusing more attention on negative behavior than positive.   A couple of books that came to mind - I don't know if these are exactly UP - are Explosive Child by Ross Greene and Child with Special Needs by Stanley Greenspan.

[Linda on the move]

Originally Posted by rainbringer 

 I did originally try to avoid praising too much.  What I found is that in practice that meant I was focusing more attention on negative behavior than positive.  

yeah -- I read Punished by Rewards when my kids were really little and tried the no praising thing. Ultimately, it felt cold to me. I do try to keep praise as specific as possible, but I praise. Esp., with my sn DD, there are things she really struggles with that come naturally to others and she is HARD worker. To not tell her what I see in her that is wonderful just seems mean. And then to be praising my SN dd while not allowing my NT dd to know that I see everything she does and is that is amazing just seems mean.

So I now praise everybody, all the time!

I even tell my DDs that they are beautiful, and I can remember when they were little thinking that if I praised their looks, they would think that their value lay in how they looked. I'm just over it now.

I don't how to explain it --- I'm not trying to get either of my kids to be a certain way. I'm not trying to manipulate them. I just think they are really amazing. I watch them carefully and tell them back the positive stuff I see, because sometimes it's hard for them to see it for themselves.

For example, my sn DD has an orthodontic appliance that comes in and out and she is supposed to have it in all the time that she isn't eating or cleaning her teeth. She normally does a great job with it, but one day she forget it when she went to school. Then she had a bit of a panic attack because she is a rigid thinker (she most likely does better with her orthodontia than a NT child because she is such a rigid thinker) Anyway, when I took it to her at school, she was really upset, but I just focused with her on how great of a job she has done with this thing for 6 months, how she does better with it than I would, and I think she should be really proud of the fact that she only forget it one time, blah blah blah. It was constant praise, and I don't know that Alfie Kohn would have thought I handled it right. But it felt right to me.

[Fay]

Play therapy is the answer.  Let the relationship with the primary caregiver be the "reward."  I recommend "Engaging Autism" by Dr. Stanley Greenspan to explain it all.  There is also a SHORT essay on play therapy with a hyperlexic autistic child in the anthology "My Baby Rides The Short Bus."  

I do not claim to be an expert on UP or GD, since I have my moments of falling off the bandwagon.  But I do have plenty of experience with this exact issue.  The child needs to be set up for success & develop a sense of competency and pride.  Hyperlexic kids do well with written reminders and visual supports around the house.

[Tigerle]

I read UP and while there was some stuff that resonated with me (particularly about praise being manipulative and time-outs being love withdrawal) other stuff, like the parts about always wondering why a child did things, was just murky to me. In a perfect world, with NT children, this might work. With sn children, it may not. I also got a very distinct vibe of intellectual arrogance from this booknwhich made me queston some of his premises.

DS has been evaluated for autism but results have come in negative. But he does have rigidity, compulsions, sensory seeking etc. I realized that some behaviours that hurt me and hurt others simply had to stop. Now. He kept yanking my hair (and sometimes that of other children) because he had a compulsion to do so to relieve tension -  I did not feel that asking "why" was in any way productive, and we are trying to find out what produces the tension anyway. But the hair-yanking really upset our relationship (not to mention the kids he did it to) and kept him from falling asleep at night. With a reward system, we managed to at least redirect it, he twirls his own hair now and does not yank. One problem down, next. I hated the concept too, treating a kid like a lab rat felt absolutely horrible to me, completely against my belief system but I feel we tried every approach and only this one worked. I have also resorted to a reward scheme for not hurting or annyoing any one in preschool, not hurting DD or other family members, not hurting the cat. We even send him off the table into the hallway if mealtime behaviour is too bad. We were simply too exhausted and worried not to resort to stuff that works.

Edited by Tigerle - 4/4/11 at 8:55am

[Tigerle]

Originally Posted by Viriditas 

My game plan to begin with is to remove as many stressors and obligations from life as possible.  I think once I make everything as simple as I can, I can really start to examine where we are and where I want us to be. 

This helped us too. Cut yourself some slack, you're pregnant! (but avoid cabin fever).

[mamanoish]

My son is diagnosed with high functioning autism and hyperlexia as well. I agree with previous posters, cut yourself some slack on the exhaustion... you're pregnant!!

And I also agree with previous posters about not trying to fit everything into "unconditional parenting". You're just going to make yourself feel guilty every time you slip outside of that label. Ever since my son was born I knew that he was different. I didn't know it was autism, but I knew it was something. Honestly, I stay away from all "curing autism" message boards and what not because I don't agree that there is anything wrong with my son to be cured. Since I started suspecting autism, my main focus was on how to help him be the BEST he could be. Sure, a lot of days we have struggles. A few weeks into my 'investigating his inner self', I realized he loves books/numbers/letters/repetition. We dove right into flash cards, memorization games, even something as simple as taking refrigerator letter magnets and teaching him each sound and we just played.  He thrives with attention like this. But it's not 24-7. Sometimes it's like 3 hours a day, or less. I also read the book Engaging Autism, and I loved it, very informational. We don't do sticker charts because he doesn't understand it. He needs a lot of stimulation, but equal "down time", where he just lays on the floor and plays with cars. His way to 'decompress' from information overload.

Of course, life isn't all happy and cheerful. He goes through periods of regression, anxiety, outbursts of anger and aggression. I realized very early on that when he is having a meltdown and is just looking right through me, if I sit on the floor with him and ask him why he's mad (which he never answers, his receptive/expressive language is seriously lacking, although his is verbal) ask him if he wants hugs and try to redirect his anger, he slips out of this quickly and bounces away like nothing ever happened. Some parents look at me like "put that kid in time out, what are you doing???" but he doesn't even understand the concept of timeout. 

It's a day to day battle. My best advice would be to just figure out who he is, what makes him tick, what excites and amuses him and go from there. Also, what helped me greatly was throwing all expectations out the window and not comparing him to anything. Sure, typical three year olds understand "no" and telling mom what you did wrong after a three minute time out, but my son doesn't. I don't even think he understands the concept of reward or "bribery". Also throwing out normal expectations of kids with ASD. He didn't read the manual on how to act like a kid with autism, or how to act like a typical three year old. All he knows is how to be him. It also helps with the guilt that you're not doing things according to how other parents are, or that you aren't living up to other parents standards of perfection. Heck, sometimes I go into the garage and put myself in time out... and sometimes I raise my voice. I'm not perfect, but I'm doing my best. 

Raising a kid with ASD is hard. You're doing awesome because you care enough to want to give him the best life possible, and try to get some rest mama! 

[buttercup]

Originally Posted by Viriditas 

As I began researching autism and parenting, reading books, blogs, websites, and
talking to "professionals," the message was clear. There is no way to parent an
autistic child without using a very clear and stringent set of rules, a strict
schedule, and a system of positive and negative reinforcement.

Whenever there's a problem I don't know how to handle, I have no idea where to
turn. Most parents have absolutely no idea what it's like parenting a child
with autism. But all I seem to hear from the parents of kids with autism is
"sticker charts work wonders," and, "he loves his computer so much, so we dole
out 10-minute sessions for good behavior."

I want to have a genuine, loving, unconditional relationship with my child, but
I need some "been there done that" guidance on how to handle the day-to-day when
every request, transition, attempt at communication seems to result in
resistance, struggle, delay, or anxiety. It's one thing to take a little more
time and come up with creative solutions for occasional roadblocks. But when
they are constant, how does one find the energy? And how do I draw the line
between letting him be who he is and challenging him so he can learn to live in
this world?

I'm hoping some of you might have some insight or know of people who are
successfully parenting kids on the spectrum unconditionally. I need to know
that it's possible and that I can do it.

Hi, congrats on expecting.  I have 3 children with autism - 8, 7 and 3.  I agree with many of the info provided by previous posters.  I think the key is to research as much as you can on how to address specific issues and simply use your instincts.  I do believe you can parent ASD kids unconditionally (maybe not to the the higher standards of others).  The things I learned pretty quickly with having special needs children was patience, acceptance and forgiveness towards other for judgments.  You are the mother.  You know your child better than any professional, close family members and friends.  Trust your instincts and you will find a way to parent the way you want.

I do agree that many ASD children need structure and a schedule.  But it truly depends on the child.  There is a say - "if you know one ASD child, then you know one ASD child."  Each ASD child is unique.  That is why it can be a challenge for professional who work with children with ASD.  Each approach to treatment is different.  All 3 of my ASD children are different from each other.  One child learned to talk with music therapy, while the other hated it.  One child needs to have a strict schedule and my other two do not.  When the professionals state that ASD kids do better with strict routines, well...that isn't necessarily true. Every child (special needs or not) benefits from routines daily.  The level of flexibility in the routine varies from child to child.  We get up in the morning, get ourselves dressed, eat breakfast, do activities that we like to do, eat lunch, do afternoon activities, eat dinner, do evening activities, get ready for bed, sleep.  That is a very loose routine.  Some ASD kids need to know what comes next.  While 1 of my children asks for our schedule for the day, the other 2 don't care so long as I give them a few mins notice.  The key is to figure out how dependent your child is on a routine and if he transitions with ease.  Some children can just move from one activity to another.  Others require some notice.  So if you think about what you do at home - you do not have to be rigid, but your child can be.  You are following the child's lead.  You are doing what is necessary to make your child comfortable so he can be self regulated and will be in the best emotional state to develop new skills and socially connect with you.  Many of these principles follow the SCERTS which incorporates floortime and other interventions - http://www.autismspeaks.org/treatment/scerts.php  It teaches to be flexible and adapt to the child's needs so that he can grow.  You might find it helpful.

Take care.

Jenni

[beachcomber]

Speaking only from personal experience, I am having to modify my UC expectations and approach for my DD. She simply responds so much better to structure, boundaries, praise and rewards for expected (aka "good") behavior in specific situations. I talked until I was blue in the face before. I set examples, I explained, I read her stories and more. She just didn't get it. She doesn't have the capacity to extrapolate from stories and from example the way NT kids her age can do. She needs things to be very clear, visually explained (schedules, pictures, etc) and a minimum of fuss. She needs to have simple boundaries that she can understand. Maybe as she gets older and gains more life experience, more social skills (we're in lots of social skills groups and she's doing well there) and so on, I'll be able to re-incorporate more of the UC ideals.But for now, I have to do what works for HER.

[kanga2roo]

Have you read any of Barry Kaufman's books? He is famous for Sonrise- written many years ago about his son.  He and his wife run this http://www.autismtreatmentcenter.org/  

[kavamamakava]

Oh gosh. There's no way my son would ever comply with reward or bribes or consequences. I've had no choice but to parent him UP. He attends a school that uses Collaborative Problem Solving which I find works well with UP. There are no sticker charts, no earned rewards, no punishments. The expectation is that children do well if they can and the school is there to help the students by offering them tools to help them do well.  My son does have a Pokemon wheel that he uses to keep on task that has his school subjects in a circle and a few wedges labeled DETOUR that he can move to when he needs a break from his activity. The linear or chart method caused him a lot of anxiety when he saw his list of things to do and wasn't sure if he could do them all or whether or not he was going to like the next subject.  He makes the choice to take a break and he doesn't earn a reward for choosing or not choosing it and he doesn't have to earn his break. He takes it when he needs it. Then he gets back to his Pokemon wheel and puts the little Pokemon marker on the subject he's working on and gets back to work. 

You might be interested in reading at this site http://www.livesinthebalance.org/

Also, Easy to Love, Difficult to Discipline was a book that I found to be about more practical applications of UP and not so much a theory. 

Diagnosis: Aspergers, Tourettes, Anxiety

[Piglet68]

I'm bumping up this thread because I have been struggling with the same issues as the OP. Not just Unconditional Parenting in terms of Alfie Kohn's book but just generally living a consensual, respectful life. We are also unschoolers so it ties into an overall philosophy about Life and Learning. I've embraced this style of parenting since my first child was born, but as they get older I often wonder if perhaps certain assumptions inherent to this style of parenting do not apply to ASD kids (DS is high-functioning autistic and DD is suspected Asperger's). For example, while I heartily believe that NT kids are intrinsically driven to consider others needs and wants and feelings (to the best of their ability given their developmental stage), I'm learning to accept the fact that my kids really don't. I mean, they do but not if it interferes with their own wants and needs. They are both very inflexible and rigid that way. So my dreams of hosting "family meetings" to resolve issues faded away - it was not a pleasant process, the kids were not able to participate in any meaningful or useful way, and ultimately it was usually us (the parents) who decided what to do about a particular issue.

It works both ways, however. There are many tenets of mainstream parenting that also don't work with my kids. Punishment and reward systems don't hold much meaning for them, and using DS's passion of computers and video games (to which he has always had unfettered access) as a giant carrot with which to control his behaviour goes against everything I believe in. But it's even more subtle than that, to simple things like "giving in" to kids vs. standing our ground. With DS for example, sometimes the punishment (for me) is not worth it. For example, today we HAD to go grocery shopping but we'd already been socializing for a couple of hours and DS was on the verge of melting down. While in the store he asked to get some jelly beans and I didn't want to because I had already bought him a bag of chips earlier and felt one such treat was plenty. The voices in my head said that I would be just "giving in" and teaching him that whining and bugging me will eventually get you what you want. But as I could see him getting more worked up about it I stopped and asked myself: is "giving in" to him and getting him that bag of jelly beans, and thus ensuring that we get through the store and out to the car without a huge embarrassing scene, worse than enduring the public meltdown (last time he threw stuff at people in the checkout lineup)? I realized that my situation isn't like other parents' - my kid is NOT going to learn anything by me being firm, but MY day, however, will be ruined. So I bought the damned jelly beans and when I felt manipulated I reminded myself that I am not dealing with "normal" kids and I have to do what I need to do sometimes (normally I try to do my shopping under better circumstances but DH works and lives in another town during the week, so I am basically single parenting most of the time).

I'm noticing here that some people interpreted Kohn's book as suggesting that we should never praise our children. I disagree. I think "empty praise" is damaging to kids, or getting praised constantly becomes background noise to them. I do praise my kids but I do so with complete honesty. I also don't attach judgements to my praise - for example if they show me some artwork I'll point out things I like ("I love the colours you chose") and then ask them how they feel about it. They may say they aren't happy with it (which they would never have done if I'd gushed like they were they next Van Gogh) or that they are proud, in which case I can share in their pride. Kohn isn't about not praising, he's about praising thoughtfully and in a way that doesn't rob the child of their own feelings about something, and that is not a judgement placed upon the child. I don't "good job!"  my kids to death, I don't praise them because I think it will be perceived as a reward or positive reinforcer, I praise them when I feel within myself pride in them, or notice something great they've done that required effort and that they themselves might not realize they have just accomplished (usually relating to behavioural/social issues). 

Anyways, I'm rambling but I'd really love to discuss this topic in more depth, focussing on specific issues like how to set boundaries, how much freedom to give ASD kids in their daily lives, how to determine when your idea of what is "best" truly is and when the kids are shortchanging themselves because of their disabilities, how much to interfere...etc.