Tag: parents

Not all parents are mothers: A reminder to programs for kids

Real Social Skills

Sometimes camps, schools, and other programs for kids think “mother” when they should be thinking “parent or guardian”. In addition to being sexist, this kind of bias can cause a number of other problems.

When programs for kids think of “mother” and “parent” as synonyms, they often end up forgetting that other parents and guardians exist. When they think of “mother” and “primary caregiver” as synonyms, they often fail to contact the appropriate adult.

For instance:

  • Susan, an eight year old, just fell off the jungle gym and needs to be taken to the hospital.
  • Susan’s teacher, Ruby, calls 911.
  • Ruby thinks “I need to call Susan’s mother to let her know that Ruby was just taken to Hypothetical Hospital”.
  • Susan’s mother, Melissa isn’t reachable during the day because she works in a secure building without access to a phone.
  • Susan’s father, Christopher, *is* reachable. He works from home, and always has his phone with him.
  • Although Susan’s emergency contact form has a note saying to call Christopher first, it doesn’t occur to Ruby to do so, because she’s thinking “I need to call Susan’s mother”, and looking at the “mother” line of the form.
  • Ruby keeps trying to reach Melissa.
  • It takes an hour before it occurs to anyone to call Susan’s *father*.

Or:

  • David is a twelve year old who has food allergies. He also has a mother, Miriam, and a father, Fred.
  • Katie, who runs the kitchen at Camp Hypothetical, has some questions about what he can and can’t eat, and whether the plan for an upcoming camp out will work for him.
  • Katie tries calling Miriam, David’s mother. She doesn’t reply. Katie tries again and again, over the course of several days.
  • It doesn’t occur to her to try calling David’s *father*, even though she knows he has one — because she thinks of mothers as the parents who keep track of that kind of information.

When you’re working with kids, it’s really important not to treat “mother” and “primary caregiver” as synonyms, and to remember that:

  • Not all children have mothers.
  • Not all mothers are primary caregivers.
  • Not all children who have mothers live with their mothers.
  • Not all mothers should be given information about their children.
  • Fathers are parents.
  • Nonbinary parents are parents.
  • When a kid has more than one parent, it’s often best to contact both/all parents (especially if contacting the first parent doesn’t work.)
  • Some kids are raised by people other than their parents (eg: grandparents, a sibling, foster parents).

Short version: If you’re working with kids and you need to contact their parent or guardian, don’t assume that their mother is the right person to contact. Look at the instructions on their emergency/parent contact form, and follow those instructions. And if you try calling a kid’s mother and don’t get a response, check to see whether they have another parent you should try calling.

You may be saying that about your student’s parent

Real Social Skills

Content note: This post is mostly intended for k-12 classroom teachers, but probably applies to other groups as well.

When you teach, it’s really important to be mindful of the fact that people from all walks of life have children.

When you say something about a particular group of people, you may be saying it about a student’s mother, father, or parent. It’s important to keep that in mind when making decisions about how to discuss things. (Including things that it’s 100% your job to teach your class about).

When you express an opinion about a group of people, your student may hear it as “I think this about your mother”, “I think this about your father”, or “I think this about you and your family.” Don’t forget that, and don’t assume that you will always know who is in the room.

It’s worth speaking with the assumption that there are people in the room who know a member of the group you’re talking about personally. When you’re working with kids, it’s worth speaking with the assumption that this person might be their parent or someone in a parental role.

This is important whether what you’re saying is positive, negative, or neutral. If you speak in a way that assumes that what you’re saying is theoretical for everyone, it can make it very hard for a child to whom it is personal to trust you. And you can’t assume that you will always know a child’s family situation, or that you will always know how a child feels about it.

For instance:

  • Many parents are in prison, have been imprisoned in the past, are facing trial, are on probation, have been arrested, have been accused of crimes, have been convicted, are on house arrest, are facing some other kind of court-ordered punishment or similar.
  • Many parents are police officers, prison guards, judges, prosecutors, probation officers, or in a related role.
  • Many parents (and children) have been the victims of violent crimes. (Including crimes committed by police officers.) Some children may have lost parents this way.
  • All of these people are parents, and most of their children go to school.
  • Some of their kids may be in your class, and you may not know this.
  • Even if you do know about the situation, you probably don’t know how they feel about it.
  • Kids have all kinds of feelings about all of these things (including, often, complicated mixed feelings).
  • If you want to talk about prison issues, crime, justice, legal reform, or any of that, it’s important to keep in mind that whatever you say about one of these groups of people, you may be saying it about a student’s parent.
  • And that you don’t know how they feel.
  • Speak in a way that gives them space to have opinions, and to be both personally affected and part of the class.
  • If you say “we” and mean “people who aren’t personally connected to this issue”, kids are likely to feel that you are distancing yourself from them and their parents.
  • It’s better to speak with the assumption that what you’re saying applies to the parents of one of your students, and that they may have complicated thoughts and feelings about this.

Similarly:

  • People of all races have children of all races. When you say something about a racial group, you may be saying it about a student’s parent.
  • People with all kinds of disabilities have children. When you say things about disabled people or disabilities, you may be saying it about a student’s parent.
  • (Including blind people, deaf people, autistic people, people with intellectual disabilities, wheelchair users, people with conditions that usually shorten lifespan, and every other kind of disability).
  • When you talk about teenage pregnancy, keep in mind that some students may have parents who were teenagers when they were born.
  • People of all political opinions, including abhorrent opinions, have children. When you say something about members of a political group, you may be saying it about a student’s parent.
  • People who work at McDonalds have children. When you talk about McDonalds workers and people in similar roles, it’s extremely likely that you’re talking about a student’s parent. (Especially if you teach in a public school).
  • Many people who do sex work have children. If you say something about strippers, porn stars, escorts, phone sex operators, dominatrixes, or whoever else, you may be saying it about someone’s mother, father, or parent.
  • People of all faiths and ethnicities have children (who may or may not be raised in their faith). If you say something about a religion or its followers, you may be saying it about the parent of one of your students.
  • And so on.

Being more abstract again:

  • People from all walks of life have kids, and you may be teaching some of their kids.
  • Keep that in mind.
  • Whatever you say about a group of people, you may be saying it about your student’s mother, father, or parent.
  • If you speak about it like it’s an abstract issue that couldn’t apply to anyone in the room, it’s likely to be really alienating.
  • This is true even if what you say is positive or sympathetic.
  • Kids need to be seen and acknowledged. If you speak as though they’re not there, it gets harder for them to trust you.
  • When you speak about a group of people, speak with the assumption that at least one student in the room has a parent who is a member of that group.

(To be clear: I’m not saying don’t talk about these issues. Sometimes it’s 100% your job to talk about these issues. What I am saying is, keep in mind that it may be personal, that you may be talking about a student’s parent, and that you won’t always know that this is the case. Taking this into account makes it possible to teach everyone in the room.)

Short version: When you’re teaching, keep in mind that the kids in your class probably have parents, and that you don’t know everything about their parents. Their parents may come from any and every walk of life. Keep this in mind when you talk about issues and groups. You may well be talking about a student’s mother, father, family, or parent. 

Resources other than ABA?

Real Social Skills

Anonymous said:hello! I am a mom of a nine year old boy. I can tell he does not like ABA at all. I have taught him so much at home, and I am a first time and single mom. Schools only teach using ABA. My son does not like it one bit and is very behavioral.

I am desperate to try and find some other type of therapy for him. Do you have any suggestions? I so want this to stop. I feel it is abusive as well as being a waste of time. Thank you for reading this and for your blog!

realsocialskills said:

I don’t know what you should do specifically, because I don’t know you or your son or what the problem is. I do think there are some things worth considering.

Some thoughts about therapy specifically:

What is the purpose of the therapy?

  • Autism shouldn’t be seen as an indication that someone needs to be in therapy (particularly not many many hours of therapy), but it often is
  • Which means that a lot of autistic kids are spending time in therapy that they don’t need or benefit from
  • If that’s what’s going on, you might not need to find a replacement – it might just be a matter of stopping something that’s not needed
  • But sometimes there are reasons for particular types of therapy.
  • So, it’s worth asking:
  • Why does my son need therapy? What are the goals? Who are the experts who can help with this?

Some reasons that therapy can be needed:

Communication:

  • If a kid is having trouble communicating their thoughts and feelings in a way that others can understand, they need help with that.
  • Usually the best person to help with that problem is a speech language pathologist with experience with AAC.
  • SLPs with that experience can help kids with articulation if articulation is the main barrier, and can also help kids find ways other than speech to communicate.
  • Here are some resources for pursuing AAC implementation for your child.
  • ABA isn’t good for supporting communication because it assumes that the problem is lack of motivation, and because it’s biased towards doing things that make good data, which often interfere with communication development.
  • PECS isn’t good enough, because it doesn’t give people enough words. 9 year olds have more to say than requests.

Literacy:

  • Some kids have a lot of trouble learning to read
  • Kids struggling to read benefit from reading/literacy specialists
  • Literacy/reading specialists have specific training in teaching reading and troubleshooting reading problems. They have a lot of tools that behavior therapists don’t have. (Because behavior therapists are experts in training and modifying behaviors; they are not experts in teaching reading or figuring out what the cognitive barriers are.)
  • For some reason, this isn’t considered a special ed service, and it might not be offered to your kid if they’re in special ed (since people sometimes don’t think across categories)
  • But you can likely get it if you ask for it on their IEP.

Movement:

  • Some kids have a lot of trouble with fine motor skills or gross motor skills
  • Eg: Some kids need a lot of help figuring out how to hold a pencil
  • Or need to learn to move in safe ways: eg: some kids walk with a gait that will cause them long-term injury if it’s not corrected
  • Occupational or physical therapy can sometimes be helpful for this kind of thing
  • (Sometimes other things can also help, like general or adapted gymnastics or art classes and related things. Not every problem needs to be solved with therapy).

Emotional issues:

  • Being autistic is hard. Going through puberty is hard. Doing both at once is really hard.
  • Some kids benefit from psychotherapy to support them in dealing with this, or with other things
  • Finding a good therapist for kids can be very difficult, and I don’t really know how to do it well. But I do know that it can sometimes be a really good thing.
  • For some kids, animal-assisted therapy works better than talk therapy or play therapy

Psychiatry:

  • I want to be cautious about this because a lot of autistic kids and other kids with developmental disabilities are on inappropriate and dangerous medication
  • I’m *not* saying that your kid needs medication. I’m not saying that you should trust suggestions to medicate, or that you should cooperate with a school insisting on it.
  • What I *am* saying is that there are legitimate uses of psychiatric medication and that for some kids (and adults) it can be game-changing.
  • (Eg: Some kids gain the ability to understand school and do assignments if they take ADHD stimulants. For some kids, anti-anxiety medication opens up a lot of new possibilities.).
  • All that said, be careful about this. Some people might want to prescribe your child medication as a form of chemical restraint to control their behavior, and that’s not something that’s going to help them.
  • It’s important to have a clear sense of what the medication is supposed to do, what the risks are, and what side effects to look out for
  • And if a medication doesn’t seem to be helping or seems to be causing your child a lot of pain or distress, take that seriously and insist that it be addressed
  • (You can’t count on doctors to do this on their own initiative; you have to be proactive about making sure you understand the medication and the impact it has on your child.)

A general consideration: Don’t trust true believers and those who make excessive claims:

  • No approach works well for everyone.
  • True believers are not trustworthy. People who think their approach is 100% universally effective will not treat you and your child well if it’s not working, and will not know how to try other things or make good referrals.
  • No approach will cure your child’s autism. It’s probably better to avoid people who claim that their approach will be deeply transformative.
  • Therapy can teach your child skills. It can help them understand themself and the world better. It can help them communicate more effective. It can help them learn how to do things and troubleshoot. It won’t take away their disability or make them a different person.
  • Therapy is more art than science. Be suspicious of people who claim that their approach is strictly evidence based.
  • (They probably won’t treat you and your child well if your child has needs that their theory doesn’t predict. People who go on about being evidence-based tend to ignore the evidence of the real child they’re dealing with in favor of the ~evidence-based~ child they’re imagining based on their theory)
  • No therapist is a good match for every child, no matter how skilled they are or how good their method is
  • Be cautious of people who claim that all children like them, all children benefit from them, or that they just love all children. People who think that aren’t usually very good at seeing children as actual people, and are unlikely to be respectful. (And also unlikely to handle it constructively if your child dislikes them or finds the things they’re doing with them unpleasant).
  • There is nothing that all children like. (Consider the fact that many children hate chocolate and Disneyland).
  • The best therapists are people who are willing to be honest about what their skills are and aren’t, and the advantages and drawbacks of their methods. They will understand that match matters, and make a referral to someone else if it doesn’t seem like it’s working well.
  • Good therapists respect you as a parent and respect your child as a person. If a therapist is constantly making you or your child feel like a failure, something is wrong and needs to change. Therapy shouldn’t be like that. Therapy should be helpful and respectful.

Also, consider getting psychotherapy for yourself:

  • Parenting is hard. Single parenting is harder.
  • Learning to parent a disabled child in a world hostile to disability is also hard
  • Your own feelings matter, and it’s important to get support in dealing with them.
  • It can be hard to find a good therapist to help with this — a lot of therapists believe toxic things about disability and parenting disabled kids (because therapists come from the same culture as everyone else).
  • You may or may not be able to find someone good.
  • But if you can find a compatible therapist who shares your values, therapy can help a lot.
  • Just, generally — don’t forget that you are dealing with a lot of hard things and that your needs and feelings are important.
  • If you are miserable, something is wrong and needs to change.

Likewise psychiatric support:

  • Depression is common. So is anxiety.
  • Sometimes toxic support groups will encourage parents (especially mothers) to see despair and panic as inevitable results of raising autistic kids
  • But they’re not. Parenting an autistic child doesn’t mean you have to be depressed and it doesn’t mean you have to be constantly anxious and afraid
  • If you’re depressed or anxious, that’s a problem that needs to be addressed
  • And it might be something that requires medical treatment.
  • If you think that you might need help, take that seriously.
  • (And don’t try to treat your own mental health struggles by trying to fix your kid — it won’t work.)
  • I don’t know you so I don’t know if this is an issue for you. I just know that it’s common.

Beyond issues of therapy: can you get him moved to a mainstream class?

  • Being autistic doesn’t mean that your son has to be in an autism class. (Even if that’s where the school wants to put him.)
  • If he hates ABA, he might do a lot better in a regular class.
  • A lot of kids do.
  • Even if he can’t talk or demonstrate learning, he can still be in a regular class, and it can still be better than being in a separated ABA class.
  • You might have to fight for this in certain school districts, but the law is on your side if you want to do so. (And there are lawyers who specialize in special education issues).

More generally:

  • The Autistic Self Advocacy Network is developing resources on insurance coverage for services other than ABA.
  • The current version (as of this post) is about Medicaid, and information about private insurance is coming soon (so if you’re reading this post and it’s a while after I posted it, click through to the link even if you don’t have Medicaid)

Don’t do this alone:

  • School systems and insurance companies and options are really overwhelming.
  • It helps a lot to get perspective and support from parents (and disabled adults) with more experience with the school system you’re dealing with
  • You’re probably not the only one in the system who has had to fight to get the school to do something other than ABA. (The Department of Education recently put out a letter about this problem.)
  • If you can find other local parents of disabled kids who are working to get their needs met respectfully, it will probably get a lot easier
  • They might be hard to find, because parent support groups are often toxic. For some reason, this is particularly true of autism-related parent support groups. A cross-disability group might be a better place to find good support.
  • (There isn’t any educational need or support need that is completely unique to autistic kids. Everything is shared by at least some people in at least some other disability groups.).
  • It’s also worth the effort. Even one person who gets it will help a lot.
  • Among other reasons: You get better results at IEP meetings if you come with a support person (even if they’re not an expert).

Other support issues:

If he’s socially isolated, the solution to that may not be therapy. It may be to help him find people who he connects with well. Which may or may not look the same as it looks for most other kids his age:

  • That may not be kids at school. Not all kids have friends at school, and that can be ok.
  • It may not be kids his exact age. Some autistic kids get along better with younger or older kids, and that can be ok too.
  • One thing worth trying is finding other kids who share his interests.
  • Or a non-theraputic class on one of his interests. Or something else you think he might enjoy. (Eg: An after school art class. Or a video game club.)
  • The Internet can be game-changing for some autistic kids. Eg: Playing Minecraft on a server. There are some kid-friendly servers that limit access to people who follow the rules. (Autcraft is specifically designed for autistic kids; there are other kid-oriented servers. Which someone likes is a matter of preference.)
  • Disability-oriented groups can also be a good thing, if they’re not about therapy or changing people. Eg: The Special Olympics, which is about access to sports in an environment that values people with intellectual disabilities, can be a very good thing for some people who are eligible.
  • Social skills groups are not good for this, because they’re not about friendship, they’re about getting kids to act out a certain script of what adults think kids should act like. That’s not fun and it’s not a good place to make friends.
  • But a social club for kids with disabilities (or autism specifically) to hang out with each other can be a good thing. It depends on the context.

Some other non-therapy considerations on how to help your son: It’s important to listen to and talk to your son:

It’s also important to talk to your son about his disability:

  • If your son knows things about his disability, he can make better decisions
  • If he knows what you think about his disability, your actions will make more sense to him — and he’ll be in a better position to correct you if you’re getting it wrong
  • This is important whether or not he can talk, and whether or not you think he can understand
  • I wrote a bigger post about that here

Just, generally speaking, it’s important to involve your son in these kinds of things:

  • I’m not saying let him decide everything; that wouldn’t be remotely appropriate for a 9 year old.
  • But, just like with other 9 year olds, when there’s a problem involving him, he needs to be involved in figuring out the solution
  • Or when decisions are being considered about him, or some change might happen that will affect him in a major way – it’s important to remember that he has a perspective and that his perspective matters
  • He will know things about his behavior and his needs and his feelings that you don’t know — for the same reason any 9 year old kid will know things about themselves.
  • Even if you can’t figure out how to have these conversations effectively yet, it’s important to keep trying
  • Whether or not you know how to find out what he thinks, whether or not his perspective changes the outcome — it will make a difference that you care what he thinks and make an effort to listen to him

Give him the right words for feelings:

  • Sometimes kids with disabilities are only given the emotional language of happy/sad/angry/excited.
  • But kids have more complex feelings than that.
  • Kids with disabilities also feel shame. And humiliation. And loss. And grief. And anticipation. And disappointment. And joy. And love. And embarrassment. And any other emotion that anyone else feels
  • Their feelings are important and need to be acknowledged.
  • Particularly – shame and humiliation are very, very frequent experiences for disabled kids, and they’re often not acknowledged at all.
  • It’s humiliating to be teased for being disabled. Or to have to do pointless repetitive things adults tell you to over and over. Or to be constantly told that your body language is bad and wrong, or to be treated as though you’ve done something disgusting when you flap your hands as an expression of happiness.
  • “You feel sad” or “you feel angry” does not begin to cover what that feels like.
  • Disabled kids have the same range of feelings as any other people, and their feelings need to be acknowledged and taken seriously.

In short: You don’t have to do ABA (even if your school system wants you to). There isn’t really a general approach that replaces it — because ABA makes overbroad claims, and there’s no approach for which those claims are true. Good approaches address specific issues and don’t take over your life. There are a lot of different things that a lot of different kids (and adults) benefit from. Which things will be helpful to your son depends on what his needs are.

Anyone else want to weigh in? What have you found helpful for your child (or yourself) other than ABA?

When parents ask invasive questions

Real Social Skills
A reader asked:
 
Hi. My parents are always asking me why I do things like rock back and forth or become unable to talk. When I say “I don’t know” they press me until I throw wordsoup at them. If I answer “I was overloaded” or whatever “Why were you overloaded?” “The lights.” “Why did the lights bug you today and not yesterday?” “I didn’t sleep well.” “Why didn’t you sleep well?” They go farther and farther until I say I don’t know, then press me until I make up reasons. I hate it. Help?
 
realsocialskills said:
 
That’s hard. There are no universal strategies that work for everyone in this case, and you might not be able to get them to stop, particularly if you are still living with them. That said, here are some possibilities:
 
Depending on your relationship with them, it might help to talk to them about it when you’re all calm. If they care about how you feel, it might help to tell them that it’s hurting you, possibly along the lines of:
  • Mom, when I am rocking back and forth or unable to speak, the last thing I want to do is talk about it. It really hurts my feelings when you press me for answers. There’s always a reason, but I don’t always know it, and it’s not something I want to talk about when I’m in that state of mind. When I’m rocking or unable to speak, I’d prefer that you leave me be.
  • or:
  • Dad, I get the sense that when I rock or can’t speak, it makes you very worried and you want to find out exactly what’s going on. I know you mean well, but that doesn’t help. Rocking and losing speech sometimes is actually fairly normal for autistic people, and it hurts my feelings when you act like it’s a problem to be solved. When I rock or can’t talk, that’s ok, and I’d prefer that you let me be and stop trying to investigate.
  • This only works if your parents care about your feelings and are likely to believe you. I don’t know you or your family, so I can’t tell you whether or not you have that kind of relationship.

Also depending on your relationship with them, you might be able to unilaterally refuse to talk about these things. This depends on how much power you have and how they are likely to react, but it’s a possibility worth considering:

  • If you refuse explicitly and say “I do not want to talk about that”, they will probably get angry
  • But it’s hard for them to argue with, particularly if you adopt a broken record approach and don’t answer questions like “why not?”, or answer them in closed ways like “That’s private.”
  • Whether this is a good idea depends on what your parents are likely to do if they get angry, and whether you consider that consequence bearable.
  • If all they’re likely to do is get angry or yell at you, it’s probably in your interest to develop a tolerance for yelling and anger
  • This is a good post by Dave Hingsburger about a man with a developmental disability learning to tolerate parental anger

Another possible broken-record approach:

  • When they’re asking, it might help to say “because I’m autistic”, and “because that’s what autistic people do” in response to all of their questions
  • Or something lighter like shrugging and saying “My brain works in mysterious ways”, if you can pull off a light tone with that.
  • This might work better than outright refusing or saying “I don’t know”, since it’s an answer, but it doesn’t get into details

Another possibility: infodump and bore them:

  • If they want to ask you about rocking or losing speech, you might try telling them every single thing you can think of about rocking and losing speech, in as verbose a manner as you can manage
  • And answer every followup question with another longwinded monologue
  • Infodumping can be a superpower of self defense. As Laura Hershey put it about wheelchair users blocking inaccessible doors, such power should not be wasted
  • If you’re infodumping and answering the question you want to answer rather than the one they want you to answer, that gives you power

Another possibility: lie

  • It might help to make up something that sounds plausible and just answer that every time they ask
  • Lying can be easier than trying to tell the truth
  • Particularly if you practice the lie and refine it to become an answer they find satisfying
  • “Why were you rocking?” “Because I was overloaded.” “Why?” “Because of the lights.” “Why did the lights bother you today and not yesterday?” “Today the lights were different. I think the bulbs are burning out.”
  • It is ok to lie when people are harassing you about things that are none of their business, even if they love you, even if they are your parents

Another possibility: Aggressively change the subject when they ask questions you don’t want to answer;

  • This is particularly effective if they have things they are particularly interested in
  • Eg “Why were you rocking?” “So, are you looking forward to the big game tonight?”
  • This doesn’t work on everyone, but it can be very effective with some people

Another possibility: Talk about the things they’re objecting to in positive terms:

  • “Why were you rocking?” “Because rocking is awesome!”
  • “Why weren’t you talking?” “Because words are overrated and the space outside of words is beautiful”
  • This can be disarming, in part because it’s rude to argue with people about things they like
  • They might follow up with: “But other people think it looks weird”, which you can answer “That’s their problem.” or “That’s ok.”
  • They might also say “That’s inappropriate”. I don’t know a great rhetorical response to that one, but people who say that are in fact wrong.

Another possibility: Turn the questions back on them:

  • “Why were you rocking?” “Why do you ask?”
  • This can be surprisingly effective with a lot of people, particularly if you can manage to sound curious or therapeutic.
  • Having a snarky/offended tone isn’t quite as effective, but it can sometimes work too, because it implies “that was not an appropriate question”. That tone will get some people to back off; it will cause others to argue

These are some of the strategies I know. Captain Awkward also talks about parents and boundaries a lot. You might want to take a look through her archives. (That said, take her advice about therapy with a grain of salt. What she says is true for a lot of people, but it isn’t necessarily going to be good advice for people with disabilities, particularly teenagers).

Beyond that, in any case, I think it’s important to keep in mind that this isn’t your fault, and that your parents should not be doing this. They may not intend any harm, they may well think they’re helping you, but they’re being mean. The problem is not caused by autism. The problem is caused by them being wrong about how to treat you.

These three posts about dealing with people being mean to you might help: “You’re ok, they’re mean.”, Learning self respect, and When people you love are mean.

I’m sorry you’re dealing with this. It’s an awful situation to be in. I hope that some of this helped.