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I FINALLY FIGURED OUT MY PROBLEM
- Thread starter dadko20
- Start date
Perhaps you are lower functioning autistic than you believe, and you cannot live independently.
Please everybody:
Please try to not take anything I say as an attack or negative judgement - nothing I say is meant to be either.
Nothing I say is meant to be assumption
about what anyone thinks or feels.
I do not assume what anyone can or cannot do.
Could be many reasons like others have said. Maybe they are over-protective. Maybe they underestimate you. Maybe you truly aren't able to live on your own right now.
Have you asked them why they won't let you live independently?
Maybe there is a way you can show them your ability, or find a compromise. But to do that you have to know what their concerns are -- you have to ask them.
If you know their reasons for saying "no you cannot live independently" maybe you can give them a good argument for changing their minds and saying yes.
If you already know why they say "no" do the reasons make sense to you? If not, could you ask them for specific examples for why they think you cannot do certain things? From there maybe you could offer examples of why you think you can.
If they are convincd you lack knowledge or skills for independent living, maybe taking a class or training course to learn those
things would convince your parents to let you live independently. Sometimes there are courses you can take to learn them. So if they say you cannot live independently because you don't know how to manage money, or cook, or something like that, then maybe try asking them to teach you or to help you find a class or life skills training program to take.
I remember there was an online cooking class offered by an autism society somewhere I saw, and in my area the city offers free training to help autistic people and people with other developmental disabilities learn and practice how to use public transit independently.
There also can be a lot of options between living with your parents (or people acting in the same role as your parents) and living 100% independently. It depends on where you live, and sometimes on your income or how much money your parents have.
Some of the in-between options include:
1. Living with other people who are autistic or have other disabilties, as roommates in a house or apartment. (This can be a group home but doesn't have to be)
If some or all of you need support with some of the things involved in being independent, you might have shared support staff who visit your home or live there with you.
Those support staff might only check in once every week or every few days, or perform specific jobs like yard work or cleaning or cooking, or they could be there every single day and do a lot more than one or two
household tasks.
If they are there every day then they might be there for only some of the day or 24/7. How much help and supervision they offer and what they help with, as well as how much (if any) authority they have to tell you what to do varies a lot.
2. Adult family support home or adult foster care. This can be just living with people who act in a parental role towards you, which wouldnt give you more independence -- But sometimes, instead, it is a situation where you have more independence than at home with your parents but more support than if you lived with regular roommates and no support staff.
3. Living with a single supportive roommate, who acts to support you more than roomates normally do but is your equal -- they don't control your life or tell you what to do, but both of you expect them to offer you advice, support and assistance that normal roommates don't usually expect from each other. My guess is the supportive roomate would probably be more protective of you than roommates normally are, like maybe they would be a little bit nosy about checking how you are or asking where you are going and when you plan to be home, or what you are doimg (although lots of normal roommates are like this too, and its just part of their personality - some people have an impulse to protect and care for everyone and may also be a little bit bossy or give advice you didnt ask for).
4. You live in an apartment building that is for supported living. In these places there is often flexible support and 24/7 staffing -- but its usually up to you if you ask for support or not. They might offer laundry and cleaning services, meals, reminders to take medication, or crisis support so you can to to them anytime you are really upset and need help to calm down or are in trouble and need help to solve a difficult problem. Often you can live in a place like that and do everything completely independently, but have the option of help right there if you ever want or need to ask for it.
5. You can live in your own home all by yourself with no roommates and any amount of on-call or regularly scheduled support from paid staff who would visit you. This usually gets arranged through homecare agencies.
_____________________________
Everything I have written in this post -- these are just my thoughts; They come into my head because I have been so badly overestimated at times, and also so so often badly underestimated...and I have no idea what the OP can and cannot do.
I have split ASD Support Levels. Sensory and RRB is level 3. Social Communication level I was not told clearly...
... in writing alone, I would be surprised if someone told me my Social Communication Level was less than Level 1.
But in speech I would not be surprised at all if it someone said it was Level 2. (Level 3 seems very very unlikely but I don't know... I don't know because:_)
I need a lot of support to access services in the community that most adults are fine to manage alone - like dealing with the bank for anything complicated, going to the hospital for any reason, or seeing an unfamiliar healthcare providor in a non-hospital clinic, sometimes arranging certain professional trades services, maybe also support to meet with an unfamilair social worker or lawyer (depends on why I would be talking to them)...and this is always because of communication difficulty.
At the bank I only need support for things like managing an RDSP or mortgage or needing to set up a new account after mine is compromised, or understanding and voicing my concerns, desires and questions about credit products and stuff like the terms of a loan. I can do basic things like make payments and withdrawals, manage a chequebook, and it all goes more or less fine, but anything more complicated and communication breaks down, I get confused and the bank employee starts talking to me like I'm 4 years old and will start to seem more confused than I am -- and then very quickly will seem either very angry or very worried...most memorable incident, the bank guy eventually started asking me what I realized after a while were capacity testing questions and it was very much like what happens often in healthcare settings if I am alone without an advocate there to smooth things over, translate and clarify and correct misconceptions ... to help me
understand things sometimes but mostly to speak up for me when I am wildly misjudged and misunderstood and truly cannot (and not because of anxiety or frustration or shyness) speak for myself...
One lab (for blood testing and similar tests) I won't ever go back to because during the period I was also in a wheelchair the infantilization was so bad they basically stopped talking to me at all and it turned into a mild and 100% unecessary violation of physical boundaries...was fairly traumatizing to be suddenly just treated like an object without thoughts or feelings for no valid nor ever explained reason.
.At other labs I am never surprised when the lab tech who draws my blood for the test(s) starts asking me capacity testing questions at what always seems to me like a very random moment....
They always ask in a surprised/shocked and worried voice, sometimes sing-songy; They talk down to me in a way I always notice they not once used when speaking to anyone else there, coworkers and patients alike, the entire 30+ minutes I have been there...they talk to me like a lost preschool-age child with no supervising adult in sight, suddenly discovered wandering aimlessly without shoes or something, and who resists talking to them (even though I am almost 40 and not resisting anything, I don't even get upset since I am so used to this - it sometimes very slightly annoys and hurts me but not to anywhere near the point where those feelings show...at this point I often find it kind of funny)...and they do this also despite how I have my ID and health card with me along with my requisition and you'd think they could assume from that alone I have done this before and either checked myself in before they called my name or that someone did so for me and is doing a good job of prompting and minimal
supervision (i always check myself in)...They ask me things like:
Are you here alone? (like they are astonished and/or horrified at the thought that I might be)
How did you get here? (If I say someone drove me they always ask where that person is and how will they know when I am done with my blood draw)
How will you get home?
Do you know how to take the bus/train/cab? Tell me how. Tell me which buses/what route you take. How do you pay?
Where do you live? Can you tell me
your address?
(cont'd in next post)
Please try to not take anything I say as an attack or negative judgement - nothing I say is meant to be either.
Nothing I say is meant to be assumption
about what anyone thinks or feels.
I do not assume what anyone can or cannot do.
Could be many reasons like others have said. Maybe they are over-protective. Maybe they underestimate you. Maybe you truly aren't able to live on your own right now.
Have you asked them why they won't let you live independently?
Maybe there is a way you can show them your ability, or find a compromise. But to do that you have to know what their concerns are -- you have to ask them.
If you know their reasons for saying "no you cannot live independently" maybe you can give them a good argument for changing their minds and saying yes.
If you already know why they say "no" do the reasons make sense to you? If not, could you ask them for specific examples for why they think you cannot do certain things? From there maybe you could offer examples of why you think you can.
If they are convincd you lack knowledge or skills for independent living, maybe taking a class or training course to learn those
things would convince your parents to let you live independently. Sometimes there are courses you can take to learn them. So if they say you cannot live independently because you don't know how to manage money, or cook, or something like that, then maybe try asking them to teach you or to help you find a class or life skills training program to take.
I remember there was an online cooking class offered by an autism society somewhere I saw, and in my area the city offers free training to help autistic people and people with other developmental disabilities learn and practice how to use public transit independently.
There also can be a lot of options between living with your parents (or people acting in the same role as your parents) and living 100% independently. It depends on where you live, and sometimes on your income or how much money your parents have.
Some of the in-between options include:
1. Living with other people who are autistic or have other disabilties, as roommates in a house or apartment. (This can be a group home but doesn't have to be)
If some or all of you need support with some of the things involved in being independent, you might have shared support staff who visit your home or live there with you.
Those support staff might only check in once every week or every few days, or perform specific jobs like yard work or cleaning or cooking, or they could be there every single day and do a lot more than one or two
household tasks.
If they are there every day then they might be there for only some of the day or 24/7. How much help and supervision they offer and what they help with, as well as how much (if any) authority they have to tell you what to do varies a lot.
2. Adult family support home or adult foster care. This can be just living with people who act in a parental role towards you, which wouldnt give you more independence -- But sometimes, instead, it is a situation where you have more independence than at home with your parents but more support than if you lived with regular roommates and no support staff.
3. Living with a single supportive roommate, who acts to support you more than roomates normally do but is your equal -- they don't control your life or tell you what to do, but both of you expect them to offer you advice, support and assistance that normal roommates don't usually expect from each other. My guess is the supportive roomate would probably be more protective of you than roommates normally are, like maybe they would be a little bit nosy about checking how you are or asking where you are going and when you plan to be home, or what you are doimg (although lots of normal roommates are like this too, and its just part of their personality - some people have an impulse to protect and care for everyone and may also be a little bit bossy or give advice you didnt ask for).
4. You live in an apartment building that is for supported living. In these places there is often flexible support and 24/7 staffing -- but its usually up to you if you ask for support or not. They might offer laundry and cleaning services, meals, reminders to take medication, or crisis support so you can to to them anytime you are really upset and need help to calm down or are in trouble and need help to solve a difficult problem. Often you can live in a place like that and do everything completely independently, but have the option of help right there if you ever want or need to ask for it.
5. You can live in your own home all by yourself with no roommates and any amount of on-call or regularly scheduled support from paid staff who would visit you. This usually gets arranged through homecare agencies.
_____________________________
Everything I have written in this post -- these are just my thoughts; They come into my head because I have been so badly overestimated at times, and also so so often badly underestimated...and I have no idea what the OP can and cannot do.
I have split ASD Support Levels. Sensory and RRB is level 3. Social Communication level I was not told clearly...
... in writing alone, I would be surprised if someone told me my Social Communication Level was less than Level 1.
But in speech I would not be surprised at all if it someone said it was Level 2. (Level 3 seems very very unlikely but I don't know... I don't know because:_)
I need a lot of support to access services in the community that most adults are fine to manage alone - like dealing with the bank for anything complicated, going to the hospital for any reason, or seeing an unfamiliar healthcare providor in a non-hospital clinic, sometimes arranging certain professional trades services, maybe also support to meet with an unfamilair social worker or lawyer (depends on why I would be talking to them)...and this is always because of communication difficulty.
At the bank I only need support for things like managing an RDSP or mortgage or needing to set up a new account after mine is compromised, or understanding and voicing my concerns, desires and questions about credit products and stuff like the terms of a loan. I can do basic things like make payments and withdrawals, manage a chequebook, and it all goes more or less fine, but anything more complicated and communication breaks down, I get confused and the bank employee starts talking to me like I'm 4 years old and will start to seem more confused than I am -- and then very quickly will seem either very angry or very worried...most memorable incident, the bank guy eventually started asking me what I realized after a while were capacity testing questions and it was very much like what happens often in healthcare settings if I am alone without an advocate there to smooth things over, translate and clarify and correct misconceptions ... to help me
understand things sometimes but mostly to speak up for me when I am wildly misjudged and misunderstood and truly cannot (and not because of anxiety or frustration or shyness) speak for myself...
One lab (for blood testing and similar tests) I won't ever go back to because during the period I was also in a wheelchair the infantilization was so bad they basically stopped talking to me at all and it turned into a mild and 100% unecessary violation of physical boundaries...was fairly traumatizing to be suddenly just treated like an object without thoughts or feelings for no valid nor ever explained reason.
.At other labs I am never surprised when the lab tech who draws my blood for the test(s) starts asking me capacity testing questions at what always seems to me like a very random moment....
They always ask in a surprised/shocked and worried voice, sometimes sing-songy; They talk down to me in a way I always notice they not once used when speaking to anyone else there, coworkers and patients alike, the entire 30+ minutes I have been there...they talk to me like a lost preschool-age child with no supervising adult in sight, suddenly discovered wandering aimlessly without shoes or something, and who resists talking to them (even though I am almost 40 and not resisting anything, I don't even get upset since I am so used to this - it sometimes very slightly annoys and hurts me but not to anywhere near the point where those feelings show...at this point I often find it kind of funny)...and they do this also despite how I have my ID and health card with me along with my requisition and you'd think they could assume from that alone I have done this before and either checked myself in before they called my name or that someone did so for me and is doing a good job of prompting and minimal
supervision (i always check myself in)...They ask me things like:
Are you here alone? (like they are astonished and/or horrified at the thought that I might be)
How did you get here? (If I say someone drove me they always ask where that person is and how will they know when I am done with my blood draw)
How will you get home?
Do you know how to take the bus/train/cab? Tell me how. Tell me which buses/what route you take. How do you pay?
Where do you live? Can you tell me
your address?
(cont'd in next post)
It gets tiresome but it will never stop happening and there seems to be truly nothing I can do about it. I have accepted that I get talked down to and treated like a small child a lot and always will be;
The reasons for it are all based on incorrect presumptions, and there are several reasons but one of them is how I speak (and "how I speak" includes: that sometimes I can't find any words at all to express something or answer someone in the very limited time available, or can only find delayed echolalia that nobody understands and that I can't explain; Or I can't get my mouth to pronounce things correctly; And I always lose a lot of words in the process of mental translation and sequencing/organization of the words to fit into coherent linear syntax and an overall understandable message, and further lose them in speaking the words unless I have pre-written memorized and practiced (out loud to myself) things I am allowed to say without interruption by reading them off the memorized page in my mind, with as many long pauses as needed -- because my working memory is so, so, so incredibly bad and writing compensates really well for that, plus takes oral-motor dyspraxia and switching back and forth rapidly from visual to auditory processing out of the picture; I also tend to not pick up on implied meanings in spoken words, I am blind to almost everything between spoken lines, and to notice until long after interactions are over that certain questions were rhetorical or i hugely misinterpreted a bunch of things and my misunderstanding is why the other person seemed so confused and then started treated me like a toddler when they had been normal with me at first....)
This could be the case. But it might not be the case.
It is hard to judge what abilities and impairments a person has based on what someone says/write or how someone writes/speaks.
You can't even reliably determine how someone speaks based on how they write (or vice versa) whether their writing is way more advanced and fluent than their speech, or their speech is way more advanced and fluent than their writing.
And that includes judging all aspects of speech and/or writing writing -- both content (what they say and how much) and form (syntax, granmar, word choice etc).
It includes also judging how they react/interact on an internet forum in response to others and what they do or do not share as a conceptual or social cognition thing - you cannot know from those things (nor would you always in person in speech) all of what a person thinks, understands, misunderstands, feels, knows and doesn't know, and why for all those things.
The thing about autism especially, is that some of the abilities that go into communication and at least pragmatic if not overall language skills are often the most impaired abilities a person has.
And across levels of functioning, we tend to struggle to varying degrees with figuring out what to say about an idea or experience to make sure others understand us....and also often struggle with recognizing when others have or haven't understood us after we say something and the specifics of that.
People like me tend to say too much (in writing -- would be the same in speech if I could). For myself this is partly because my
thoughts are like virtual reality theatre in immense and complicated very concrete tangible details, and also because I tend towards having truly no idea how I will be understood or misunderstood nor why -- I try to cover all possibilities. Some people say too little (this is also me in speech) maybe because they can only come up with so many words for their thoughts, maybe because speech or writing is physically or mentally exhausting for any number of reasons, maybe because they don't want to overwhelm people, maybe because this is how non-autistic people speak -- where they expect the listener to fill in every detail and infer most or all of the important parts of the message, etc.
And nobody can really know all the details of a complicated situation like the OP has, involving disagreement with their parents about their ability to handle the amount of independence they want to have. So, so, so much goes into a judgement about ability to live independently. So many things inform and influence opinions - things we cannot see from out vantage point here on the forums.
The reasons for it are all based on incorrect presumptions, and there are several reasons but one of them is how I speak (and "how I speak" includes: that sometimes I can't find any words at all to express something or answer someone in the very limited time available, or can only find delayed echolalia that nobody understands and that I can't explain; Or I can't get my mouth to pronounce things correctly; And I always lose a lot of words in the process of mental translation and sequencing/organization of the words to fit into coherent linear syntax and an overall understandable message, and further lose them in speaking the words unless I have pre-written memorized and practiced (out loud to myself) things I am allowed to say without interruption by reading them off the memorized page in my mind, with as many long pauses as needed -- because my working memory is so, so, so incredibly bad and writing compensates really well for that, plus takes oral-motor dyspraxia and switching back and forth rapidly from visual to auditory processing out of the picture; I also tend to not pick up on implied meanings in spoken words, I am blind to almost everything between spoken lines, and to notice until long after interactions are over that certain questions were rhetorical or i hugely misinterpreted a bunch of things and my misunderstanding is why the other person seemed so confused and then started treated me like a toddler when they had been normal with me at first....)
This could be the case. But it might not be the case.
It is hard to judge what abilities and impairments a person has based on what someone says/write or how someone writes/speaks.
You can't even reliably determine how someone speaks based on how they write (or vice versa) whether their writing is way more advanced and fluent than their speech, or their speech is way more advanced and fluent than their writing.
And that includes judging all aspects of speech and/or writing writing -- both content (what they say and how much) and form (syntax, granmar, word choice etc).
It includes also judging how they react/interact on an internet forum in response to others and what they do or do not share as a conceptual or social cognition thing - you cannot know from those things (nor would you always in person in speech) all of what a person thinks, understands, misunderstands, feels, knows and doesn't know, and why for all those things.
The thing about autism especially, is that some of the abilities that go into communication and at least pragmatic if not overall language skills are often the most impaired abilities a person has.
And across levels of functioning, we tend to struggle to varying degrees with figuring out what to say about an idea or experience to make sure others understand us....and also often struggle with recognizing when others have or haven't understood us after we say something and the specifics of that.
People like me tend to say too much (in writing -- would be the same in speech if I could). For myself this is partly because my
thoughts are like virtual reality theatre in immense and complicated very concrete tangible details, and also because I tend towards having truly no idea how I will be understood or misunderstood nor why -- I try to cover all possibilities. Some people say too little (this is also me in speech) maybe because they can only come up with so many words for their thoughts, maybe because speech or writing is physically or mentally exhausting for any number of reasons, maybe because they don't want to overwhelm people, maybe because this is how non-autistic people speak -- where they expect the listener to fill in every detail and infer most or all of the important parts of the message, etc.
And nobody can really know all the details of a complicated situation like the OP has, involving disagreement with their parents about their ability to handle the amount of independence they want to have. So, so, so much goes into a judgement about ability to live independently. So many things inform and influence opinions - things we cannot see from out vantage point here on the forums.
In all my years working with people with developmental disabilities, I mostly saw parents who infantilized their adult children.
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