What might my autistic child's future look like?
February 28, 2022 2:02 PM Subscribe
My son is 20 months old and shows many red flags for autism. He has been in Early Intervention (virtually) for 2 months but has not made much progress. We are on the waitlist to see a developmental pediatrician but it will still be several months. I am so worried about him and I would love stories about how things turned out for other autistic children. More details below.
He does not point, wave, clap, respond to his name, or make sustained eye contact. He has not said a single word but does babble occasionally. He's been doing this new thing where he will lead me by the hand to his high chair if he's hungry or to the door if he wants to go outside. Sometimes he will just hold my hand and walk around the house. He loves songs and music. He also loves to be held and wants to always be touching us or near us. We have kept him pretty sheltered during the pandemic but when we take him to parks, he has no interest in playing with other children or even going near them. He really likes looking at lights. He's generally pretty happy and easygoing and sleeps and eats well (if not teething!)
We will love him no matter who he grows up to be, but I am still worried about his future and what that may look like. I don't know how he will fare in preschool when the time comes. Will he ever talk? How will I potty train him if I am unable to teach him things because he has such a hard time focusing? I feel like in-person therapy would be more effective for him, but is that worth the risk of covid? Should we be pursuing private speech therapy?
I know I sound very scattered, but this is my first baby and I feel like a failure and I just don't know what will happen to him. Am I doing enough for him? Are there more autism resources in the Bay Area I should be making use of?
He does not point, wave, clap, respond to his name, or make sustained eye contact. He has not said a single word but does babble occasionally. He's been doing this new thing where he will lead me by the hand to his high chair if he's hungry or to the door if he wants to go outside. Sometimes he will just hold my hand and walk around the house. He loves songs and music. He also loves to be held and wants to always be touching us or near us. We have kept him pretty sheltered during the pandemic but when we take him to parks, he has no interest in playing with other children or even going near them. He really likes looking at lights. He's generally pretty happy and easygoing and sleeps and eats well (if not teething!)
We will love him no matter who he grows up to be, but I am still worried about his future and what that may look like. I don't know how he will fare in preschool when the time comes. Will he ever talk? How will I potty train him if I am unable to teach him things because he has such a hard time focusing? I feel like in-person therapy would be more effective for him, but is that worth the risk of covid? Should we be pursuing private speech therapy?
I know I sound very scattered, but this is my first baby and I feel like a failure and I just don't know what will happen to him. Am I doing enough for him? Are there more autism resources in the Bay Area I should be making use of?
Sent you memail
posted by atomicstone at 2:28 PM on February 28, 2022
posted by atomicstone at 2:28 PM on February 28, 2022
Hi there - first of all, sending you a psychic hug because it's really hard to face that your kid might not "be like other kids."
My kid is autistic, and while my kid is still in elementary school, I can tell you with complete certainty that there is no way anyone can predict what your 20 month old will be like in preschool or later. Autistic kids (and adults, too) can have such wildly differing presentations that it's really hard to make predictions about future outcomes.
The one thing I'd urge you to do is transition your child to in-person services ASAP. No matter how great the provider is, therapies over Zoom for kids is a pale imitation of the in-person contact. Also, I believe there are social benefits to the child and child's family to being in spaces with other families like them. I made friends with other parents, and I picked up on other information -- schools, activities, community supports, etc -- that I would never have gotten directly from therapists or doctors.
posted by stowaway at 2:30 PM on February 28, 2022 [15 favorites]
My kid is autistic, and while my kid is still in elementary school, I can tell you with complete certainty that there is no way anyone can predict what your 20 month old will be like in preschool or later. Autistic kids (and adults, too) can have such wildly differing presentations that it's really hard to make predictions about future outcomes.
The one thing I'd urge you to do is transition your child to in-person services ASAP. No matter how great the provider is, therapies over Zoom for kids is a pale imitation of the in-person contact. Also, I believe there are social benefits to the child and child's family to being in spaces with other families like them. I made friends with other parents, and I picked up on other information -- schools, activities, community supports, etc -- that I would never have gotten directly from therapists or doctors.
posted by stowaway at 2:30 PM on February 28, 2022 [15 favorites]
Get on Instagram and Twitter and follow the hashtag #ActuallyAutistic.
Check out these autistic-run accounts:
Fidgets and Fries
Dr. Devon Price
Neurodivergent Lou
Nigh-functioning Autism
The Autisticats
It’s really informative to hear about autism directly from people who have lived experience.
posted by nouvelle-personne at 2:54 PM on February 28, 2022 [19 favorites]
Check out these autistic-run accounts:
Fidgets and Fries
Dr. Devon Price
Neurodivergent Lou
Nigh-functioning Autism
The Autisticats
It’s really informative to hear about autism directly from people who have lived experience.
posted by nouvelle-personne at 2:54 PM on February 28, 2022 [19 favorites]
You are not a failure. You are doing a great job.
I would definitely recommend in person therapy. Weighing up the benefits vs risks, the early intervention and support is worth it.
posted by kinddieserzeit at 3:03 PM on February 28, 2022 [3 favorites]
I would definitely recommend in person therapy. Weighing up the benefits vs risks, the early intervention and support is worth it.
posted by kinddieserzeit at 3:03 PM on February 28, 2022 [3 favorites]
If you're not already doing this, be sure to speak to him directly as much as you can.
posted by bleep at 3:07 PM on February 28, 2022 [1 favorite]
posted by bleep at 3:07 PM on February 28, 2022 [1 favorite]
Also check out the book Uniquely Human and anything recommended by Not An Autism Mom. Listen to #ActuallyAutistic adults - there are a lot of us out there.
posted by matildaben at 3:12 PM on February 28, 2022 [2 favorites]
posted by matildaben at 3:12 PM on February 28, 2022 [2 favorites]
My autistic daughter potty trained at five. I’d potty trained my son easily at two and a half and at first I was baffled why this wasn’t working but you know what? They make pull-ups and potty training happens when it happens. Pushing to meet a milestone she wasn’t capable of just made us both miserable. A huge part of parenting is learning to recognise what your child’s abilities are and encouraging them at their speed.
posted by dorothyisunderwood at 3:17 PM on February 28, 2022 [4 favorites]
posted by dorothyisunderwood at 3:17 PM on February 28, 2022 [4 favorites]
If you've met one autistic person, you've met one autistic person - it's so hard to predict how kids with ASD will develop. Have the patience to let your child reveal themselves to you. I'll drop you a memail this evening. Hang in there, initial autism diagnosis can be rough for new parents.
posted by WedgedPiano at 4:22 PM on February 28, 2022 [5 favorites]
posted by WedgedPiano at 4:22 PM on February 28, 2022 [5 favorites]
Having supportive parents who aren't pushing him through the more damaging therapies goes really far in an autistic person's success. Source: other autistic people.
I'm autistic and was undiagnosed into adulthood, so he's ahead of the game compared to some. I'm a person with a loving marriage, a college degree, a job I sorta like, and a lot of other things going for me. I'm just... me, who also is autistic, ultimately. Having autism will be his reality but not the sum of who he is. His individuality and personality will have much more to do with his outcomes than his diagnosis. In that regard, he is just another person.
posted by wellifyouinsist at 5:01 PM on February 28, 2022 [13 favorites]
I'm autistic and was undiagnosed into adulthood, so he's ahead of the game compared to some. I'm a person with a loving marriage, a college degree, a job I sorta like, and a lot of other things going for me. I'm just... me, who also is autistic, ultimately. Having autism will be his reality but not the sum of who he is. His individuality and personality will have much more to do with his outcomes than his diagnosis. In that regard, he is just another person.
posted by wellifyouinsist at 5:01 PM on February 28, 2022 [13 favorites]
Sorry to double-post. I decided to just post this here instead of memailing. This comes from the lens of a U.S. parent with a kid with ASD and a speech delay.
Initial diagnosis can be tough for parents - it's totally okay to acknowledge some grief about the person you thought your child would be. If you have a formal diagnosis, it can also be a relief that you have something that the neurotypical world redcognizes.
I highly recommend, if you live in a larger city / community, to ask around and find where Families with Special Needs or Families with Autism congregate - for me, this was a facebook group that put me in touch with a lot of other seasoned parents.
If you need action items from where to go from here, here's what I recommend:
Read The Reason I jump: The Inner Voice of a Thirteen-Year-Old Boy
If you haven't already, get a formal diagnosis from a neurologist or pediatric whatever that your child has autism.
This formal diagnosis (assuming you live in the US), will typically allow you to work toward getting an IEP (Individualized Education Plan) for your student. For my child, this meant access to Speech Therapy, Occupational Therapy, and Developmental Preschool.
Oh, and kids with IEPs absolutely get a free pass when it comes to potty training deadlines.
Other folks with autism have weighed in before about the harmful affects of ABA during their childhood here on AskMe, so I won't get it into it here - but I do highly recommend Speech Therapy and Occupational Therapy. Speech Therapy is just as much about teaching you how to model speech development and receptive language for your child. Occupational Therapy can give you good strategies to help accomodate your child's sensory needs and help them navigate this neurotypical world.
Your child may not interact with others on the playground, but 1. That's totally fine, and 2. it might come with time. Parallel play is usually the first thing to develop, and what developmental preschool will help build in terms of tools.
Give yourself patience, too - raising a child with ASD isn't a sprint, it's a journey. You have a lot to take in and a lot to learn to be a good advocate for your child. Make sure to just enjoy spending time with them, too.
posted by WedgedPiano at 5:34 PM on February 28, 2022 [5 favorites]
Initial diagnosis can be tough for parents - it's totally okay to acknowledge some grief about the person you thought your child would be. If you have a formal diagnosis, it can also be a relief that you have something that the neurotypical world redcognizes.
I highly recommend, if you live in a larger city / community, to ask around and find where Families with Special Needs or Families with Autism congregate - for me, this was a facebook group that put me in touch with a lot of other seasoned parents.
If you need action items from where to go from here, here's what I recommend:
Read The Reason I jump: The Inner Voice of a Thirteen-Year-Old Boy
If you haven't already, get a formal diagnosis from a neurologist or pediatric whatever that your child has autism.
This formal diagnosis (assuming you live in the US), will typically allow you to work toward getting an IEP (Individualized Education Plan) for your student. For my child, this meant access to Speech Therapy, Occupational Therapy, and Developmental Preschool.
Oh, and kids with IEPs absolutely get a free pass when it comes to potty training deadlines.
Other folks with autism have weighed in before about the harmful affects of ABA during their childhood here on AskMe, so I won't get it into it here - but I do highly recommend Speech Therapy and Occupational Therapy. Speech Therapy is just as much about teaching you how to model speech development and receptive language for your child. Occupational Therapy can give you good strategies to help accomodate your child's sensory needs and help them navigate this neurotypical world.
Your child may not interact with others on the playground, but 1. That's totally fine, and 2. it might come with time. Parallel play is usually the first thing to develop, and what developmental preschool will help build in terms of tools.
Give yourself patience, too - raising a child with ASD isn't a sprint, it's a journey. You have a lot to take in and a lot to learn to be a good advocate for your child. Make sure to just enjoy spending time with them, too.
posted by WedgedPiano at 5:34 PM on February 28, 2022 [5 favorites]
My child showed the same symptoms at the same age. Turns out it was how I was interacting with her. Now she's catching up quickly thanks to the help of a speech therapist. My state has early intervention referrals, and about a month after starting we had an assessment and about two weeks later we had our first session.
posted by flimflam at 8:22 PM on February 28, 2022 [1 favorite]
posted by flimflam at 8:22 PM on February 28, 2022 [1 favorite]
I've known many autistic people, several in my family alone. It's true what others say about each autistic person being different, but I recommend finding autistic adults who can share their stories (either directly or through media). You may also like reading Exiting Nirvana (I probably would not recommend Park's first book, the Siege, as it may infuriate you to hear about her experiences).
Also someone noted getting your child's hearing checked - I'd suggest that as well. It's a myth that Deaf children/people don't like music. Some of the things you describe could be indicative of language deprivation which Deaf children are at high risk from.
posted by Toddles at 8:51 PM on February 28, 2022 [2 favorites]
Also someone noted getting your child's hearing checked - I'd suggest that as well. It's a myth that Deaf children/people don't like music. Some of the things you describe could be indicative of language deprivation which Deaf children are at high risk from.
posted by Toddles at 8:51 PM on February 28, 2022 [2 favorites]
Don’t worry too much yet. My son was very very similar and has just received a diagnosis of autism (at almost 6 years old) but we got this diagnosis more to receive services than because he is in in contactable. His kindergarten is skeptical he is autistic, which is annoying but also makes us hopeful. Kids have not grown up normally with corona and I think they maybe traumatized and stressed and I know mine is not neurotypical but he will definitely have a normal life and will need continuing therapy but he is a joy in our family, has tons of fun and interests, and eventually he has met his milestones. Even if late.
posted by pairofshades at 8:56 PM on February 28, 2022 [2 favorites]
posted by pairofshades at 8:56 PM on February 28, 2022 [2 favorites]
Sorry for the second post but also my son doesn’t like strangers, finds socializing difficult and that has come very late, but he does have a few little friends and he likes his family and 20 months old is very young to judge whether your son will be able to socialize. It may end up being limited, but my son sounds like yours and he has been able to socialize even if it has been slow and he’s not open to strangers suddenly or just playing with new kids on a playground etc. but over time he’s made friends in his preschool and kindergarten groups… he needed support in the beginning and probably still does but he can do it and considers himself a person who has friends.
posted by pairofshades at 9:02 PM on February 28, 2022 [2 favorites]
posted by pairofshades at 9:02 PM on February 28, 2022 [2 favorites]
Following with interest. My autistic kid is 5 now and we saw similar signs (I had him evaluated for the first time at 12 months, but we didn’t get an official diagnosis until 18 months). I’m also intensely concerned about his future.
We found weekly state ECI pretty worthless (in Texas). Since he was an easy-going kid, our pediatrician actually advised against more intensive therapy, so we put it off — but when we started full-time ABA at a center, he progressed much faster (in terms of language acquisition, ability to communicate needs, and socialize in his own way). I wish we’d started earlier.
That was pre-Covid. With lockdown, we switched to full-time, exclusive in-home therapy with his same ABA therapist from the center. That lasted 1.5 years. It was better in some respects — no distractions, so his language and academic skills progressed faster — but his social skills really lagged.
Now he’s in kindergarten at a public school and things are going better. He’s in a classroom with neurotypical kids, then gets pulled out for a special ed classroom part of the day . His social skills have skyrocketed. But he’s learned almost nothing else — his academic skills have stagnated.
And I’ll also just say: just for us, stories like “my kid was the same way until [whatever], then they caught up to their peers and turned out fine*! That’ll happen — just you wait!”, with those kind of guarantees, were profoundly unhelpful (and in some cases hurtful).
*everyone “turns out fine” in their own way, but stories like that often included that kind of judgmental language.
posted by liet at 9:23 AM on March 1, 2022 [1 favorite]
We found weekly state ECI pretty worthless (in Texas). Since he was an easy-going kid, our pediatrician actually advised against more intensive therapy, so we put it off — but when we started full-time ABA at a center, he progressed much faster (in terms of language acquisition, ability to communicate needs, and socialize in his own way). I wish we’d started earlier.
That was pre-Covid. With lockdown, we switched to full-time, exclusive in-home therapy with his same ABA therapist from the center. That lasted 1.5 years. It was better in some respects — no distractions, so his language and academic skills progressed faster — but his social skills really lagged.
Now he’s in kindergarten at a public school and things are going better. He’s in a classroom with neurotypical kids, then gets pulled out for a special ed classroom part of the day . His social skills have skyrocketed. But he’s learned almost nothing else — his academic skills have stagnated.
And I’ll also just say: just for us, stories like “my kid was the same way until [whatever], then they caught up to their peers and turned out fine*! That’ll happen — just you wait!”, with those kind of guarantees, were profoundly unhelpful (and in some cases hurtful).
*everyone “turns out fine” in their own way, but stories like that often included that kind of judgmental language.
posted by liet at 9:23 AM on March 1, 2022 [1 favorite]
Nobody can tell the future for any child, autistic or not!
I know there's a lot of controversy about "ABA" but therapists with the label "ABA" are the few actually covered by insurance. And there's a lot of variety among them. I would say rather than focus on the label, think about it in terms of your child needing to *learn,* like all kids. And like all kids, your child needs to learn in a warm, loving, supportive environment that shows results. The core of autism is a difference in attending to/processing social information. So this means that they may need special approaches to learn things that are going to help them be independent, like potty training. Behavioralist approaches can be very successful in this regard and do not need to be abusive to be helpful. You should have a good feeling about it, see progress, and see your kid happy and engaged.
Definitely get in-person therapy. Teletherapy is ridiculous for toddlers.
posted by haptic_avenger at 11:03 AM on March 1, 2022
I know there's a lot of controversy about "ABA" but therapists with the label "ABA" are the few actually covered by insurance. And there's a lot of variety among them. I would say rather than focus on the label, think about it in terms of your child needing to *learn,* like all kids. And like all kids, your child needs to learn in a warm, loving, supportive environment that shows results. The core of autism is a difference in attending to/processing social information. So this means that they may need special approaches to learn things that are going to help them be independent, like potty training. Behavioralist approaches can be very successful in this regard and do not need to be abusive to be helpful. You should have a good feeling about it, see progress, and see your kid happy and engaged.
Definitely get in-person therapy. Teletherapy is ridiculous for toddlers.
posted by haptic_avenger at 11:03 AM on March 1, 2022
Hi. I'm 36 years old and recently figured out I'm autistic. It's been hugely helpful for me to understand myself--my lifelong anxiety, social difficulties, ways I experience the world and my own body, etc. I wish I'd had this information decades ago, but I'm making up for lost time. I don't for a second believe it helped me to not know I was autistic. (I also think if I were growing up now, someone would have clocked it.) Because I'm coming into this as an adult, I've mostly sought out adult autistic perspectives, and I highly recommend you do the same. You can start with #actuallyautistic on social media if you want to peruse a lot of perspectives. You can also look at someone like Matt Lowry, an autistic psychologist. The two blog posts currently up on his website are a great place to start. The Autism Spectrum image at the top of his meme gallery is a really useful way to think about how autistic traits might look and vary between autistic people (i.e., the "autism spectrum" isn't a line from "less autistic" to "extremely autistic" but a much more complex collection of traits).
I would actually recommend you not seek out perspectives of allistic (non-autistic) parents of autistic kids, or invest deeply in materials targeting allistic parents of autistic kids until you have spent a lot of time getting to know autistic adults and their experiences and perspectives. When a parent is going through the process of getting their kid diagnosed, it can be really scary, and really tempting to seek out other parents who have also been through it. However, one of the most valuable things you can do for your son right now is to be intentional about getting to know the community he is part of. There's a really painful dynamic between allistic parents of autistic kids and autistic adults where the parents get so stuck in their own experience they dismiss what autistic adults tell them ("You can communicate verbally, so what you say doesn't apply to my kid" or, "ABA is the only thing that has helped my child, how dare you suggest it's traumatic (just because you have PTSD from it)"). Your son is 20 months old. You will not harm him if you take time now to invest in getting to know the autistic community and listening to autistic perspectives. If anything, you will be better positioned to support him, appreciate him, and be his advocate.
posted by theotherdurassister at 12:01 PM on March 1, 2022 [3 favorites]
I would actually recommend you not seek out perspectives of allistic (non-autistic) parents of autistic kids, or invest deeply in materials targeting allistic parents of autistic kids until you have spent a lot of time getting to know autistic adults and their experiences and perspectives. When a parent is going through the process of getting their kid diagnosed, it can be really scary, and really tempting to seek out other parents who have also been through it. However, one of the most valuable things you can do for your son right now is to be intentional about getting to know the community he is part of. There's a really painful dynamic between allistic parents of autistic kids and autistic adults where the parents get so stuck in their own experience they dismiss what autistic adults tell them ("You can communicate verbally, so what you say doesn't apply to my kid" or, "ABA is the only thing that has helped my child, how dare you suggest it's traumatic (just because you have PTSD from it)"). Your son is 20 months old. You will not harm him if you take time now to invest in getting to know the autistic community and listening to autistic perspectives. If anything, you will be better positioned to support him, appreciate him, and be his advocate.
posted by theotherdurassister at 12:01 PM on March 1, 2022 [3 favorites]
I would actually recommend you not seek out perspectives of allistic (non-autistic) parents of autistic kids, or invest deeply in materials targeting allistic parents of autistic kids until you have spent a lot of time getting to know autistic adults and their experiences and perspectives
I really disagree with this. It's important to have both perspectives - parents and autistic adults, as well as professionals I've gotten a lot of great advice from other parents, and also learned important insights from adults. They are not mutually exclusive at all. And they are two totally different things - parenting advice, vs insight into what it's like to be an autistic child. Kids (ALL kids) don't generally have the best insight into their own parenting.
posted by haptic_avenger at 12:46 PM on March 1, 2022 [1 favorite]
I really disagree with this. It's important to have both perspectives - parents and autistic adults, as well as professionals I've gotten a lot of great advice from other parents, and also learned important insights from adults. They are not mutually exclusive at all. And they are two totally different things - parenting advice, vs insight into what it's like to be an autistic child. Kids (ALL kids) don't generally have the best insight into their own parenting.
posted by haptic_avenger at 12:46 PM on March 1, 2022 [1 favorite]
I could write a book about my autistic son... and I did. I am not going to spam here, but if you were to go to amazon and search for "3500 autistic" you will find my novel about my son Benjamin and his obsession with Disney. When I was writing it, I tried to be very open about the challenges and frustrations involved with raising an autistic person, without getting bogged down in the doom and gloom.
The bottom line is that, as others have mentioned, every autistic person is different. Some go on to lead very successful independent lives. Some (like my son) will almost certainly never be able to live on their own. Resources for parents have gotten much better in the last twenty years, make use of all of them.
Regarding the comment above about not seeking out advice from non-autistic parents of autistic kids, well... It's all a spectrum. A highly functional autistic person who is able to navigate the world independently has a very different set of experiences and very understandable grievances, and they are very much entitled to have their voices heard and be respected for their lived experience. But elsewhere on the spectrum lie parents like me, whose son is essentially non-verbal and at the age of 28 operates at the level of a grade school child. You need all of the advice and support you can get in order to help your child to grow up to be as independent as possible.
posted by Lokheed at 2:21 PM on March 1, 2022
The bottom line is that, as others have mentioned, every autistic person is different. Some go on to lead very successful independent lives. Some (like my son) will almost certainly never be able to live on their own. Resources for parents have gotten much better in the last twenty years, make use of all of them.
Regarding the comment above about not seeking out advice from non-autistic parents of autistic kids, well... It's all a spectrum. A highly functional autistic person who is able to navigate the world independently has a very different set of experiences and very understandable grievances, and they are very much entitled to have their voices heard and be respected for their lived experience. But elsewhere on the spectrum lie parents like me, whose son is essentially non-verbal and at the age of 28 operates at the level of a grade school child. You need all of the advice and support you can get in order to help your child to grow up to be as independent as possible.
posted by Lokheed at 2:21 PM on March 1, 2022
In case it wasn't clear from my above comment: Forty-eight, I am not saying don't talk to professionals or allistic parents of autistic kids. I'm saying do that second. If your kid is autistic, your kid holds a marginalized identity and lives in a world that makes life harder for people like him.
An alarming proportion of the discussion, parenting advice, academic practices, and mental health interventions around autistic kids centers the perspectives, preferences, norms, and comfort of allistic people (parents and professionals, mostly, but also allistic society more broadly) in ways that harm autistic kids and don't challenge the unexamined ableism and bias parents of autistic kids have. (We live in an ableist society. Everyone has ableism and ableist assumptions they don't realize they have. I'm not singling out parents of autistic kids as uniquely ableist.) You may have heard the expression, "Nothing about us without us" in an activism context. I think it's really important here. If your child has a marginalized identity, that's a community you need to engage with. You might end up with an allistic doctor, teacher, therapist, or fellow parent who has the biggest and most positive impact on your parenting of your son--that's fine. What's crucial is that you learn how to listen to allistic perspectives as you would listen to a person talking about city they've never been to--how do they talk about people who have been there? Are they open about the limitations of their understanding? Do they make a point of amplifying the voices of people with firsthand experience? And, does what they say track with your experience of talking to people with firsthand experience? There are autistic parents of autistic kids who talk about their experiences on both sides of the equation--that might be the best place to start.
posted by theotherdurassister at 2:28 PM on March 1, 2022 [6 favorites]
An alarming proportion of the discussion, parenting advice, academic practices, and mental health interventions around autistic kids centers the perspectives, preferences, norms, and comfort of allistic people (parents and professionals, mostly, but also allistic society more broadly) in ways that harm autistic kids and don't challenge the unexamined ableism and bias parents of autistic kids have. (We live in an ableist society. Everyone has ableism and ableist assumptions they don't realize they have. I'm not singling out parents of autistic kids as uniquely ableist.) You may have heard the expression, "Nothing about us without us" in an activism context. I think it's really important here. If your child has a marginalized identity, that's a community you need to engage with. You might end up with an allistic doctor, teacher, therapist, or fellow parent who has the biggest and most positive impact on your parenting of your son--that's fine. What's crucial is that you learn how to listen to allistic perspectives as you would listen to a person talking about city they've never been to--how do they talk about people who have been there? Are they open about the limitations of their understanding? Do they make a point of amplifying the voices of people with firsthand experience? And, does what they say track with your experience of talking to people with firsthand experience? There are autistic parents of autistic kids who talk about their experiences on both sides of the equation--that might be the best place to start.
posted by theotherdurassister at 2:28 PM on March 1, 2022 [6 favorites]
My child has an ASD diagnosis, and while they’ve been slower than some peers to pick up on certain social and physical skills, I’ve seen so much growth in the last several years that I hesitate to project out very far. It’s maddening not to know, but… you can’t really know.
In my opinion, while certain bureaucratic ends are furthered by a diagnosis, and while some autistic adults find meaning and community in the label, there are a lot of purposes for which it may shed more heat than light. The most important questions are: what’s the next thing to learn, and what supports can we offer? And the diagnosis won’t tell you that. It’s not a map or a set of directions — it’s more like when you get off the bus and ask some guy where the post office is and he gestures vaguely and says “over that way.”
posted by sockrilegious at 2:51 AM on March 6, 2022 [1 favorite]
In my opinion, while certain bureaucratic ends are furthered by a diagnosis, and while some autistic adults find meaning and community in the label, there are a lot of purposes for which it may shed more heat than light. The most important questions are: what’s the next thing to learn, and what supports can we offer? And the diagnosis won’t tell you that. It’s not a map or a set of directions — it’s more like when you get off the bus and ask some guy where the post office is and he gestures vaguely and says “over that way.”
posted by sockrilegious at 2:51 AM on March 6, 2022 [1 favorite]
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