Mystified how to help my autistic daughter
January 3, 2023 2:58 PM Subscribe
My daughter is afflicted with intrusive thoughts. What can I do?
My 19-year-old autistic daughter can't control her own mind. Certain songs get into her head and she can't get them out. Certain characters from cartoon series, too.
We've tried various meds -- Prozac, Abilify, various ADHD drugs. It's hard to say if they've helped her. She is not good at self-reporting.
She spends an inordinate amount of time on her computer, because there isn't anything else she wants to do except walk the dog with me, and I can't do that all day. She doesn't have friends and doesn't know how to make friends -- she isn't interested in other people's inner life, just how they answer questions about her obsessions. Sports are mostly a mystery to her. She works with an ABA therapist, but she doesn't feel that person's advice (just don't want those videos!) helps.
At this point I don't even know who to talk to or what questions to ask.
My 19-year-old autistic daughter can't control her own mind. Certain songs get into her head and she can't get them out. Certain characters from cartoon series, too.
We've tried various meds -- Prozac, Abilify, various ADHD drugs. It's hard to say if they've helped her. She is not good at self-reporting.
She spends an inordinate amount of time on her computer, because there isn't anything else she wants to do except walk the dog with me, and I can't do that all day. She doesn't have friends and doesn't know how to make friends -- she isn't interested in other people's inner life, just how they answer questions about her obsessions. Sports are mostly a mystery to her. She works with an ABA therapist, but she doesn't feel that person's advice (just don't want those videos!) helps.
At this point I don't even know who to talk to or what questions to ask.
ABA therapists focus on actions and fitting in to neuro typical standards which IMO doesn’t help - autistic people are people who get to set boundaries and learn social skills their own way. I have found my kids even as teens and young adults benefited most from play/art therapists who use multiple ways to connect with clients and help them express themselves.
Intrusive thoughts that aren’t harmful isn’t necessarily a problem. Her fixing on cartoons and songs seems pretty normal to me - all kids do that to a degree and autistic people often go a bit further. I will redirect my kid that she has a fixed time to share her current interest and then we need to swap for another topic for a bit. Her room currently is a Hello Kitty shrine and that’s fine.
It sounds like a social group for autistic young adults would help. We recently tried an online D&D group that welcomed neurodivergent kids which was good (left for scheduling reasons).
Autistic friendships don’t have to be the same as neuro typical friendships - my kid will parallel play with her BFF for hours, not talking much. Video games are a big part of their communication.
My guess is she has online friends - as valid as offline - but she doesn’t talk to you about them because you’re indirectly telling her she’s wasting time on the computer which is a primary place for her.
posted by dorothyisunderwood at 3:41 PM on January 3, 2023 [16 favorites]
Intrusive thoughts that aren’t harmful isn’t necessarily a problem. Her fixing on cartoons and songs seems pretty normal to me - all kids do that to a degree and autistic people often go a bit further. I will redirect my kid that she has a fixed time to share her current interest and then we need to swap for another topic for a bit. Her room currently is a Hello Kitty shrine and that’s fine.
It sounds like a social group for autistic young adults would help. We recently tried an online D&D group that welcomed neurodivergent kids which was good (left for scheduling reasons).
Autistic friendships don’t have to be the same as neuro typical friendships - my kid will parallel play with her BFF for hours, not talking much. Video games are a big part of their communication.
My guess is she has online friends - as valid as offline - but she doesn’t talk to you about them because you’re indirectly telling her she’s wasting time on the computer which is a primary place for her.
posted by dorothyisunderwood at 3:41 PM on January 3, 2023 [16 favorites]
Also when my kiddos have been overwhelmed and can’t communicate, we do hand slaps - left for no, right for yes and strength of slap for intensity. I ask questions and they slap my hand (which is fun!) and eventually we get to the things that they can’t say aloud. It helps to be mildly silly about it and marvel at their strength and pretend your hand is on fire etc. To ease the tension.
posted by dorothyisunderwood at 3:44 PM on January 3, 2023 [5 favorites]
posted by dorothyisunderwood at 3:44 PM on January 3, 2023 [5 favorites]
ABA has a lot of critics, and it sounds like it is not working for your child in they way that she needs. Are there any autistic adults or mentors in her life? They could probably do more than clinicians at this point in her life.
posted by Toddles at 3:45 PM on January 3, 2023 [10 favorites]
posted by Toddles at 3:45 PM on January 3, 2023 [10 favorites]
Let me tell you a secret, Austic people love deeply. They find things they enjoy and they stick with them for really long periods of time because they enjoy them.
So before you try and change anything, there has to be knowledge that this computer stuff is valuable to her. Very very valuable.
Also many fandom spaces (I'm assuming this based on your comment, feel free to ignore if im wrong) are really accommodating to people who are autistic in a way that many other spaces just aren't. They are very opt in to content, things are well labeled about what to expect. And many of them enforce strict social rules about respect, language and diversity.
Computers are also great in general for people with sensory issues. She can moderate volume, light and amount of stimulus on the screen (what moves and doesn't and when) itself at all times, which is just nice for someone who has to navigate a world that can easily become too much.
So anything you do has to take into account that the things she likes and are comfortable with are that way for legitimate reasons, before you try and expand it to other things.
Now that is out of the way.
So, in terms of intrusive thoughts, is she in distress? If not, there's not much need to change it, but maybe increase your patience around it. It sometimes helps to speak to autistic people very clearly about the how's and whys of their own behavior and what you dislike if you want a behavior change. But note, don't be too general with this or it can cause increased distress if they believe they cannot think about or talk about the thing at all. But simple rules like after you've talked about x for fifteen minutes I need a break are perfectly fine to have. If she is in distress understanding what the distress is, can help identify how to address it.
For example if she really hates getting songs stuck in her head, then there's some strategies like listening to music that's not as catchy, or wordless, or in a different language. Maybe listening to the song all the way through with help. For example I get songs stuck in my head when a song gets interrupted, so avoiding that.
ABA is controversial at best. Im not going to get into it you likely know at this point. But, the most beneficial therapy is one in which the person establishes a relationship with the therapist. So, changing to someone she feels works for her may see better results. Or someone she's sees as smart, or worth listening too. Ask her what she wants in a therapist, that might give you a really good idea of what you would need to look for.
posted by AlexiaSky at 3:49 PM on January 3, 2023 [8 favorites]
So before you try and change anything, there has to be knowledge that this computer stuff is valuable to her. Very very valuable.
Also many fandom spaces (I'm assuming this based on your comment, feel free to ignore if im wrong) are really accommodating to people who are autistic in a way that many other spaces just aren't. They are very opt in to content, things are well labeled about what to expect. And many of them enforce strict social rules about respect, language and diversity.
Computers are also great in general for people with sensory issues. She can moderate volume, light and amount of stimulus on the screen (what moves and doesn't and when) itself at all times, which is just nice for someone who has to navigate a world that can easily become too much.
So anything you do has to take into account that the things she likes and are comfortable with are that way for legitimate reasons, before you try and expand it to other things.
Now that is out of the way.
So, in terms of intrusive thoughts, is she in distress? If not, there's not much need to change it, but maybe increase your patience around it. It sometimes helps to speak to autistic people very clearly about the how's and whys of their own behavior and what you dislike if you want a behavior change. But note, don't be too general with this or it can cause increased distress if they believe they cannot think about or talk about the thing at all. But simple rules like after you've talked about x for fifteen minutes I need a break are perfectly fine to have. If she is in distress understanding what the distress is, can help identify how to address it.
For example if she really hates getting songs stuck in her head, then there's some strategies like listening to music that's not as catchy, or wordless, or in a different language. Maybe listening to the song all the way through with help. For example I get songs stuck in my head when a song gets interrupted, so avoiding that.
ABA is controversial at best. Im not going to get into it you likely know at this point. But, the most beneficial therapy is one in which the person establishes a relationship with the therapist. So, changing to someone she feels works for her may see better results. Or someone she's sees as smart, or worth listening too. Ask her what she wants in a therapist, that might give you a really good idea of what you would need to look for.
posted by AlexiaSky at 3:49 PM on January 3, 2023 [8 favorites]
Huh...
Intrusive thoughts are serious, but I admit the examples you gave were not what I was expecting in terms of intrusive thoughts.
"Certain songs get into her head and she can't get them out."
See, that, by itself, is actually relatively normal.
That's what people refer to as earworms.
"Once they start, these music memories can repeat uncontrollably—for hours, days, even weeks at a time. Research indicates that nine out of ten people have experienced earworms that have lasted for an hour or longer. A few unfortunate folks even report having a song stuck in their heads for a year or more."
https://www.kennedy-center.org/education/resources-for-educators/classroom-resources/media-and-interactives/media/music/your-brain-on-music/your-brain-on-music/your-brain-on-music-earworms/#:~:text=Once%20they%20start%2C%20these%20music,for%20a%20year%20or%20more.
I myself have had earworms that lasted from days to weeks, and I'm mentioning this because I don't have or experience any other symptoms, of intrusive thoughts or ocd.
So, that characteristic by itself isn't necessarily pathological.
You seem to be describing that she has special interests in particular songs or cartoons, because she likes them, and then they get stuck in her head as an earworm.
Which, well, that by itself is a very normal autistic experience.
They're turning into earworms because she does like them, so she's not going to want to stop watching the videos. It's not as great having it stuck on repeat, but it sounds like it's happening because she does mostly still want to listen to the song/cartoon etc on repeat, and if she wanted different music, then listening to other music does tend to help.
posted by Elysum at 3:51 PM on January 3, 2023 [3 favorites]
Intrusive thoughts are serious, but I admit the examples you gave were not what I was expecting in terms of intrusive thoughts.
"Certain songs get into her head and she can't get them out."
See, that, by itself, is actually relatively normal.
That's what people refer to as earworms.
"Once they start, these music memories can repeat uncontrollably—for hours, days, even weeks at a time. Research indicates that nine out of ten people have experienced earworms that have lasted for an hour or longer. A few unfortunate folks even report having a song stuck in their heads for a year or more."
https://www.kennedy-center.org/education/resources-for-educators/classroom-resources/media-and-interactives/media/music/your-brain-on-music/your-brain-on-music/your-brain-on-music-earworms/#:~:text=Once%20they%20start%2C%20these%20music,for%20a%20year%20or%20more.
I myself have had earworms that lasted from days to weeks, and I'm mentioning this because I don't have or experience any other symptoms, of intrusive thoughts or ocd.
So, that characteristic by itself isn't necessarily pathological.
You seem to be describing that she has special interests in particular songs or cartoons, because she likes them, and then they get stuck in her head as an earworm.
Which, well, that by itself is a very normal autistic experience.
They're turning into earworms because she does like them, so she's not going to want to stop watching the videos. It's not as great having it stuck on repeat, but it sounds like it's happening because she does mostly still want to listen to the song/cartoon etc on repeat, and if she wanted different music, then listening to other music does tend to help.
posted by Elysum at 3:51 PM on January 3, 2023 [3 favorites]
AlexiaSky beat me to it. I know as an autistic person diagnosed late in life that for whatever reason my brain often craves repetition in a way that doesn't make sense to many people, but for me it's comforting and I'm not distressed by it at all. I will also watch the same shows over and over and can quote dialogue as well. It satisfies an itch. People on the spectrum can find comfort in repetition. My friends and family are really comfortable telling me that they don't want to talk endlessly about Hamilton and I'm okay with that (even though I think they're crazy because I have all sorts of theories).
I do wonder about what keeps her busy in general though, as well as opportunities to learn about her way of thinking. Does she go to school/work/volunteer? Does she have chores and responsibilities like cooking? What does she understand about autism and does she have an online group of peers?
I also wonder about your understanding of her autism and how to help her navigate a happy life. Do you have support?
posted by yes I said yes I will Yes at 4:00 PM on January 3, 2023 [5 favorites]
I do wonder about what keeps her busy in general though, as well as opportunities to learn about her way of thinking. Does she go to school/work/volunteer? Does she have chores and responsibilities like cooking? What does she understand about autism and does she have an online group of peers?
I also wonder about your understanding of her autism and how to help her navigate a happy life. Do you have support?
posted by yes I said yes I will Yes at 4:00 PM on January 3, 2023 [5 favorites]
Can the ABA practitioner, take the money and hire a dog walker. Three of you on the dog walks for a while, then your daughter and the dog walker. Even better if they’re a neurodiversity movement educated support worker for autistic folks who’s also up to walk dogs.
posted by The Last Sockpuppet at 4:29 PM on January 3, 2023 [15 favorites]
posted by The Last Sockpuppet at 4:29 PM on January 3, 2023 [15 favorites]
Also just another data point, your daughter is well within normal for neurodivergent folks! Love and support will help build her still developing brain and foster resilience against abuse and exploitation. You both are doing great!
posted by The Last Sockpuppet at 4:31 PM on January 3, 2023 [3 favorites]
posted by The Last Sockpuppet at 4:31 PM on January 3, 2023 [3 favorites]
Sorry for three comments - constant on repeat music brain stuff can be a symptom of dissociation. Evaluate for PTSD/CPTSD. Autistic girls and women have this the majority of the time because coping with a society not geared for us can be profoundly traumatic.
posted by The Last Sockpuppet at 4:38 PM on January 3, 2023 [4 favorites]
posted by The Last Sockpuppet at 4:38 PM on January 3, 2023 [4 favorites]
Yes, I think it would really help here if you could articulate the problem better - to yourself, if not necessarily to us - to help guide where you look. Is *she* distressed by her fixations or lack of offline hobbies? Are they interfering with her basic life stuff like reasonable self care and keeping up with any classes or work she might have? Is there anywhere in her life she can be around other neurodivergent people? Defining the actual problem more specifically might be helpful in finding the right sort of help or support.
While you work that out I really encourage you to drop the ABA therapy as a start.
posted by Stacey at 4:50 PM on January 3, 2023 [4 favorites]
While you work that out I really encourage you to drop the ABA therapy as a start.
posted by Stacey at 4:50 PM on January 3, 2023 [4 favorites]
Adding my small voice to the chorus: ABA is harmful to autistic people.
posted by lizifer at 5:09 PM on January 3, 2023 [8 favorites]
posted by lizifer at 5:09 PM on January 3, 2023 [8 favorites]
As a person who usually has a song stuck in the background of their head - which is an earworm - but who has also experienced neurological torment-by-repetition of a song or a person/character's name in the foreground endlessly to the point of having trouble holding a short list in short-term memory, or being able to sleep, those two things are not the same thing.
And chiming in with the agreement that ABA is bad and some ND-led disability advocacies consider it abuse, but there are really great developmental specialists and OTs and group programs out there that can help with sensory management and skills-strengthening techniques for you both.
posted by Lyn Never at 5:16 PM on January 3, 2023 [2 favorites]
And chiming in with the agreement that ABA is bad and some ND-led disability advocacies consider it abuse, but there are really great developmental specialists and OTs and group programs out there that can help with sensory management and skills-strengthening techniques for you both.
posted by Lyn Never at 5:16 PM on January 3, 2023 [2 favorites]
Full disclosure, family also work there, but I know they and many other families have found helpful resources for families and individuals at the Asperger's / Autism Network (AANE). Those include many support groups for families, young adult individuals, etc that could be of help to you.
posted by ldthomps at 5:27 PM on January 3, 2023
posted by ldthomps at 5:27 PM on January 3, 2023
You can ask your daughter if she wants to find a new therapist, and if so, if she would like your assistance. If affirmative, you can research some names of good therapists who have a reputation for working well with individuals with autism. (Then, ask your daughter if she would like you to help her make a new appointment, or if she wants to take it from there).
It sounds like you are in need of local-to-you resources. One family (young adult with autism, their parents) I know has been very satisfied with the programming offered through Main Street. Maybe there's something similar where you live? Based on your profile, we aren't located in the same country... but I would expect that the government would provide some sort of support for individuals like your daughter. These local-to-you resources can help you and your daughter make plans for the transition to adulthood. It's also possibly worth a discussion about contingency planning.... what would happen if something happened to your daughter's parent(s)... most 19 year olds would struggle, but your daughter might struggle more than most.
And regarding earworms / watching certain cartoons on repeat/ not having friends... I would check to make sure that these "issues" are actually bothering your daughter?
posted by oceano at 6:57 PM on January 3, 2023 [1 favorite]
It sounds like you are in need of local-to-you resources. One family (young adult with autism, their parents) I know has been very satisfied with the programming offered through Main Street. Maybe there's something similar where you live? Based on your profile, we aren't located in the same country... but I would expect that the government would provide some sort of support for individuals like your daughter. These local-to-you resources can help you and your daughter make plans for the transition to adulthood. It's also possibly worth a discussion about contingency planning.... what would happen if something happened to your daughter's parent(s)... most 19 year olds would struggle, but your daughter might struggle more than most.
And regarding earworms / watching certain cartoons on repeat/ not having friends... I would check to make sure that these "issues" are actually bothering your daughter?
posted by oceano at 6:57 PM on January 3, 2023 [1 favorite]
She may find comfort in The Imp of the Mind by Lee Baer or in Dr. Michael Greenberg on OCD (a little “tough love”-y on that one, so maybe not). I can’t speak to her perspective but I have had these symptoms.
posted by Countess Elena at 7:59 PM on January 3, 2023 [1 favorite]
posted by Countess Elena at 7:59 PM on January 3, 2023 [1 favorite]
she isn't interested in other people's inner life, just how they answer questions about her obsessionsIt's completely fine to have social relationships that are primarily about sharing about obsessions, and to want friends who are interested in the same things you are. Plenty of autistic people do this, especially when they find other autistic people to be friends with. It's a fun way to interact with people and share about the things that are important to you!
Nthing that ABA is abusive and, according to your daughter, not helping her. Here's a previous AskMe about ABA that had a lot of people sharing their stories. Here's the MetaTalk about the ABA AskMe. Here's a blog post from an autistic person who interned at an ABA school. Here's a blog post from an autistic person who experienced ABA as a child. Here's a policy brief from an autistic-led organization. Here's the Wikipedia article on autism and ABA.
Nthing that your daughter having songs and cartoon characters stuck in her head is fine as long as it isn't distressing to her. Nthing that it's okay to spend a lot of time on the computer.
I am worried about your daughter. She is an adult. She should get to make decisions about her own life.
posted by spiderbeforesunset at 8:50 PM on January 3, 2023 [14 favorites]
You may want to look into Natural Language Acquisition (@meaningfulspeech or @bohospeechie on Instagram are excellent sources of information). NLA is how many autistic children learn language via echolalia and gestalts. The lines from songs and cartoon characters may be communicative for her. Determining the function of her echolalia may help you connect with her more and determine what she needs.
posted by scrubbles at 10:06 PM on January 3, 2023 [1 favorite]
posted by scrubbles at 10:06 PM on January 3, 2023 [1 favorite]
"...my brain often craves repetition..."
posted by yes I said yes I will Yes
eponysterical in the best way, given you have the best username
posted by Don Pepino at 9:44 AM on January 4, 2023 [2 favorites]
posted by yes I said yes I will Yes
eponysterical in the best way, given you have the best username
posted by Don Pepino at 9:44 AM on January 4, 2023 [2 favorites]
I saw "afflicted with intrusive thoughts" and thought it was going to be about murder or self-harm or something like that, but she's just getting songs stuck in her head???
That's completely normal. I would say "it happens to everybody" except it apparently doesn't happen to you???
Just because your daughter has an autism diagnosis doesn't mean that she's automatically abnormal whenever her experiences are different than yours. Sometimes you're the weird one. If you have never had a song stuck in your head then you are definitely the weird one on that.
It's also pretty normal these days for young people to spend most of their time at home on their computers because going out is really expensive. I notice that the only other thing you say she likes doing (walking the dog) also happens to be a free activity.
Has your daughter actually said she's distressed by the "problems" you've listed or are you making assumptions based on your own experiences and likes/dislikes?
Did you leave something major out of your post? Like does she get really upset about having a song stuck in her head and has a screaming meltdown over it? Or she's refusing to get off the computer to go to school or get a job? Or she stays up all night watching cartoons instead of sleeping?
What is the actual harm that is happening?
posted by Jacqueline at 8:32 PM on January 4, 2023
That's completely normal. I would say "it happens to everybody" except it apparently doesn't happen to you???
Just because your daughter has an autism diagnosis doesn't mean that she's automatically abnormal whenever her experiences are different than yours. Sometimes you're the weird one. If you have never had a song stuck in your head then you are definitely the weird one on that.
It's also pretty normal these days for young people to spend most of their time at home on their computers because going out is really expensive. I notice that the only other thing you say she likes doing (walking the dog) also happens to be a free activity.
Has your daughter actually said she's distressed by the "problems" you've listed or are you making assumptions based on your own experiences and likes/dislikes?
Did you leave something major out of your post? Like does she get really upset about having a song stuck in her head and has a screaming meltdown over it? Or she's refusing to get off the computer to go to school or get a job? Or she stays up all night watching cartoons instead of sleeping?
What is the actual harm that is happening?
posted by Jacqueline at 8:32 PM on January 4, 2023
Learning and practicing a new song is the best way I know to dislodge an earworm. Even better is to learn and practice more than one new song, because this reduces the chance that the new song will turn into a new earworm. Even listening to different songs can help, if she is unable to sing or learn a song to try to chase the current one away.
Does you daughter have sensory processing issues? I can get migraines from being exposed to either too intense sound or light. And when I have a migraine and an ear worm happening simultaneously it is very unpleasant indeed. Migraines seem to be able to trigger particularly intrusive ear worms. If this is what is happening to her taking a triptan might be enough to make it go away.
The symptoms you describe also tend to be a side effect of being over tired and needing sleep but too keyed up to sleep. Changes in her sleep schedule might help.
posted by Jane the Brown at 12:33 AM on January 5, 2023 [1 favorite]
Does you daughter have sensory processing issues? I can get migraines from being exposed to either too intense sound or light. And when I have a migraine and an ear worm happening simultaneously it is very unpleasant indeed. Migraines seem to be able to trigger particularly intrusive ear worms. If this is what is happening to her taking a triptan might be enough to make it go away.
The symptoms you describe also tend to be a side effect of being over tired and needing sleep but too keyed up to sleep. Changes in her sleep schedule might help.
posted by Jane the Brown at 12:33 AM on January 5, 2023 [1 favorite]
Hey, there. Yes, it does sound like you haven't yet found the right resources for yourself yet to better understand your daughter, the way her mind works, and what you can do to help her navigate life as an adult with autism. As others above have mentioned, the intrusive thoughts you're describing aren't fitting in to the clinical definition of intrusive thoughts, and it also sounds like ABA is not the right thing for her to be doing for a variety of reasons, including the fact that she herself doesn't like it!
What resources* have you taken advantage of in the past to learn about autism and neurodivergence? Do you feel like you have the vocabulary to ask questions, or is that also nebulous for you? It's clear you care about your daughter. Help us help you by letting us know where you're at with your own journey towards understanding her and we can direct you to things to read and people to talk to.
*Please avoid Autism Speaks at all costs.
posted by The Adventure Begins at 1:57 AM on January 7, 2023
What resources* have you taken advantage of in the past to learn about autism and neurodivergence? Do you feel like you have the vocabulary to ask questions, or is that also nebulous for you? It's clear you care about your daughter. Help us help you by letting us know where you're at with your own journey towards understanding her and we can direct you to things to read and people to talk to.
*Please avoid Autism Speaks at all costs.
posted by The Adventure Begins at 1:57 AM on January 7, 2023
Hey, there's actually a recent AskMe that may be of use to you!
https://ask.metafilter.com/369470/Looking-for-books-and-media-with-positive-neurodivergent-representation
posted by The Adventure Begins at 1:59 AM on January 7, 2023
https://ask.metafilter.com/369470/Looking-for-books-and-media-with-positive-neurodivergent-representation
posted by The Adventure Begins at 1:59 AM on January 7, 2023
If your daughter hasn't found them already in her own, both Discord and Tumblr are great for finding other people with similar obsessions. Tumblr can be neat for making your own fan content, but Discord is nice because you can talk a lot directly with other people as excited as you. (I haven't seen if she finds any of this a problem or if it just bothers you, but most of us enjoy our obsessions.)
posted by blueberry monster at 7:07 PM on January 17, 2023
posted by blueberry monster at 7:07 PM on January 17, 2023
This thread is closed to new comments.
(I'm thinking of you; watching our kids suffer is incredibly painful and frustrating.)
posted by metasarah at 3:35 PM on January 3, 2023