Helpful or Harmful?

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I'm a NT mom with two young kids. My daughter, 3, is high-functioning autistic. I know every autistic person, every parent of a child with autism, and every family has different needs and preferences, but I'm struggling with my choices in helping my daughter (both as a young kid who needs guidance and an autistic kid who has extra difficulties) and am eager to hear a variety of opinions, particularly from autistics, on guiding principles in deciding whether to proceed with special ed and therapies. My daughter has it harder than my son, some aspects of her anxiety and autism really suck for her. She is also a kid, my baby. I think she needs extra supports, at a minimum to provide structure and calm that I can't manage 24/7. My number one rule in thinking about therapies is that everyone/everything must be respectful of her. However, it's hard to find my line between what feels respectful or not. She needn't pretend to be NT. She should have the opportunity to learn and grow, though, and learn socially-acceptable behavior, as my NT son is also learning because he's a young kid. Any thoughts on finding the line?

I would not even attempt to answer this without knowing more about your daughter. What are the things that make life difficult for her, right now? What are you as a family, struggling with in terms of her development?

I suppose my question was less about meeting one particular need, but rather the process of deciding whether a struggle needs to be addressed. I'm curious to know how other parents have come to decide to continue with therapies or goals. I'm curious to know what happens when parents get it wrong, and how parents and children course-correct.

For instance, the ABA company we work with threw out some starting point goals, including naming emotions based on a drawing. My daughter is finding her own answers, memorizing body language and sighs, and frequently asking about emotions, it feels wrong t interfere with her learning to do something so artificial as to teach her using drawings of what faces might look like when a person is experiencing different emotions. So I said no to this goal, she'll find her own way.

Does she have to say hello when the behaviorists arrive? Maybe! Maybe I'm ok with that, even if it makes her uncomfortable.

My suggestion is to dispense with ABA for social skills and teach her about social and emotional things yourself, like parents would also guide their NT children, even though NT children are much more primed to pick things up by themselves in this area.

Many things learned in ABA don't generalize well in real life, and they often use stringent procedures like the child can't move on to the next learning phase until they score a certain level on tests of the current phase.

My son is 6, and pre-verbal. We recently lost our ABA services, following a temporary move (which ended up not working out, so we returned to our former residence).

This is just to give you some background information on where I am coming from.

As a parent, you know your child best. You spend the majority of the day with her, and you have known her longer than anyone else involved with her therapy. You will also be the one still in the picture long after these paid professionals have gone with the wind.

Therefore, you (and your daughter, if she is able to) must decide what goals are important for her and for your family. That is the simple rule of thumb. You are the expert on your kid and your particular family's needs. Not some outsider, who has no life-long "skin in the game" (so to speak), so do whatever you feel is important for your daughter to learn and progress. Pick goals that will make life easier for her and for all of you. As she is still so young, focus on foundational skills that will be the basis on which more important skills will develop. For example, focus on basic fine motor skills, so that she can eventually become proficient on critical self help skills.

And remember to let her just be a child from time-to-time. If I could out the clock back and go back to 2012, there are so many things that I would do differently. Thankfully, my baby is still only 6 and it is not too late. I won't get back the time we lost, but we still have enough time ahead of us to focus on what is most important to us (his family) and to him. We no longer have ABA or back to back therapies, and that has been the best thing that happened to us. We - and not some random outside - are now in charge of his learning experiences.

And, I am finally seeing him happy, enjoying his life, LEARNING and loving his chance to finally just bea child ! Life is finally good.

Why would she have to say hi? Because it's social convention? She's only 3. NT 3 year olds often don't say hi to incoming people unless they're a friend or something. If it makes her uncomfortable then I don't see why you'd want to make her do it. Saying hi to a behaviorist (or anybody who comes over) is not an important life skill in the grand scheme of things. It's not even an important communication skill in the grand scheme of things, especially for such a young kid. Talking to people, especially new people is uncomfortable enough so it should be something worth working on like learning how understand and articulate emotions, effectively communicating wants and needs, and being able to understand reasoning for why she can or can't have/do something, for example, she can't eat a huge pile of candy because it'll give her a stomach ache.
Personally, I am much more receptive to learning when a good reason for learning it is provided.

What was the reason ABA was recommended to you? If it was just a standard thing offered with no particular goals in mind, and just b/c of an autism diagnosis, then that would be concerning. Generally the point of therapy is to address a particular or particular issues.

To me that is the gold standard: To consider the specifics and how to address them

ABA was recommended and we use it because my daughter's primary goals and needs are around emotional regulation and safety.

I do question the socializing goals, but so far, what I have seen is that the behaviorists are supporting growth in a way that I would, too. I believe that saying "Hi" to a behaviorist that she has known for the better part of the year and that she is excited to see is a doable and worthwhile goal. I understand that it makes her uncomfortable and so my questioning the goal leans more toward questioning whether there is some smaller, intermediate step to take, and not cutting it out entirely. I think it's worthwhile for any child to say hello to a very familiar and liked person. I say this having experienced childhood anxiety and difficulty with this myself. The reason is that I would like for her to have the opportunity to develop friendships, as well as have an easier time navigating through the community. A majority of people generally expect a friendly reception. My feeling is that everyone should have a short repertoire of scripts to display kindness, so that they are in turn treated with kindness. It is not unusual to expect that a young NT child would greet very familiar adults. As that child gets older, they might not need further support with socializing, but will learn the usual, "Nice day out there!" or "Did you have a good Thanksgiving?" But I suspect my daughter will need more support with these items. In any case, I was really thinking about the bigger picture and not an individual goal.

I would have to say I agree with this. When my kids were younger, I was very focused on respecting their neurology and not forcing things that do not come naturally. I was all about "embracing" it. While I still think this is good, in principle, my more enlightened self realizes that I generalized that principle perhaps a bit too much. I don't think I did enough with "social pleasantries" and I think if I would have done more, it would be more automatic at this point in time, instead of something my kids have to consciously think of (my son is 14 and my daughter is 10). Because certain things didn't come naturally to them as little kids, I think I just...well...I didn't push them. Instead, I wish I would have tried to figure out the reason they were not doing it, because if it was simply that it didn't come naturally, I could have taught them how to do it, and made them practice, so that they would be able to do it.

Take my son. He just started high school. All of the students were told to list 3 goals. They were not prompted in anyway, other than to choose three things that they think would have the greatest impact on their feelings of self esteem and their future success. 2 of my son's were "greeting people" and "making eye contact." A 14 year old shouldn't have to be spending mental energies on reminding himself to greet people. Also, there are probably some people cringing at "making eye contact," but he said it doesn't really bother him to make eye contact, it just doesn't come naturally to him/he doesn't think about it, but he now sees it as a hindrance to socializing with people because they either think he is "hiding something" or "not interested." So now he has to walk around school, reminding himself to greet people and make eye contact. Not because it hurts him in any way to do it, but because I didn't help him learn this when he was younger. Sucks. I wish he could be working on something different, but he is where he is, and I respect him for not worrying that his goals looked ridiculous compared to those of others. He identified things he felt he needed to work on and he had the courage to put it out there. I am proud of him for that, but sorry that I didn't do more to make sure he wasn't in this position at 14.

I think one thing to keep in mind is that many of us have older children. It is very easy to look back and know what you would have done differently when your kid was 3. But that doesn't mean that those "differences" apply to your kid or anyone elses. I see where my kids are now, and I know what we have/haven't tried since they were 3 and whether or not it seems to have worked. But at 3 I knew none of this. I think the most important thing a parent of a young kid on the spectrum can do is to be open minded about a wide range of treatments/interventions. Then take an honest look at your kid and your family and try to figure out if it will fit or not. I feel that in general, our story is a successful one. My goal, almost from the beginning, was to learn about everything--even the things that sounded crazy--but not to try/implement everything. Sometimes it is easy to fall victim to the hype that if you are not doing "everything," you are not doing enough. I think in most situations, if you are doing everything, you are doing WAY too much. And you will likely find that your kids develop in spite of your deficiencies. Afterall, even though I never taught my kid to greet people and make eye contact, he is still highly regarded by his teachers and brave enough to confront his self-identified deficits head-on

To put it in a nutshell...ask specific questions. Listen to as many perspectives as you can find. Then figure out what seems to fit and what doesn't. Tweak when necessary. Pay attention to your kid, and put their needs above your need to be positively evaluated by others. And move forward.

I think the big is as you said, for your child to learn and grow and be part of society, which includes learning social skills, certainly as basic as greeting others. I don't think there is need to rush these skills though, since she is only three. At three, I think I focused mainly on playing with result of good cognitive development. I only learned social skills later, like after ten. I greet people with a smile now, I am friendly and people respond well to this.