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Do I have a right to be angry, or is it childish?

autism-and-autotune

A musical mind with recent revelations
I'm the only member of a family of four who has had the opportunity to learn of my neurodivergence and do something about it. I highly suspect that both my parents have things going on in their brains, but due to not being willing to address said divergencies, both my older sibling and I were subject to abuse and neglect while growing up.

Having learned of my official autism diagnosis, it has given me the opportunity to reflect on my whole childhood...but also I've gained knowledge while applying for SSI benefits. No fruits of this effort yet, but one document states that 'as of a month after my birth, SSI recognized me as becoming disabled.' My birth was difficult and I was premature, and under the age of ten I was diagnosed with NVLD...and almost twenty years after that, my diagnosis of autism was known to me.

I apologize if this is confusing, but my query is this: was I actually disabled this whole time, growing up? Yet...I never knew about this? Or is it only once I was diagnosed with autism that I've become disabled, officially? There's a lot I don't remember about my childhood, but I feel I was kept in the dark about a great deal concerning the circumstance of my birth. I only knew that I had developmental issues but nothing severe, and certainly nothing physical was ever wrong with me.

For anyone wondering, I haven't been in large amounts of contact since moving out over two years ago. They've done a few things to warrant pure no-contact, which I'm working up to doing.
 
You always have the right to be angry. It’s just that getting stuck in anger is a disservice to yourself and potential happiness in your life. Anger is a valid feeling to have, but it is also an indication that there are things about your feelings to understand and possibly make some changes.

As to your specific question about whether you were disabled all along or only when you were diagnosed… it makes much more sense to think of it as something that was there all along. “Disabled,” however, could be interpreted many different ways, especially when SSI is concerned. I would think of it more as with your new understanding of yourself and how your brain works, you can gain more clarity on the challenges and the struggles you had growing up.

Understanding your childhood with great compassion for the little kid that you were, struggling with many of the same things you do now, could help to gain the understanding that you need to move through the anger, instill the boundaries with family members that are necessary, and move toward more peace of mind.
 
I apologize if this is confusing, but my query is this: was I actually disabled this whole time, growing up? Yet...I never knew about this? Or is it only once I was diagnosed with autism that I've become disabled, officially?
Depends on what you are really asking. Perhaps you should start here. I'd rather not attempt to parse the complexity of social security benefits, or the tight-fisted nature of a government bureaucracy. Perhaps the most notable comment to make is that obtaining Social Security disability benefits can be notoriously difficult, no matter what the circumstances may be. Where many applicants are turned down, only to pay for attorneys specializing in such processes who eventually secure benefits most people who are probably entitled to them in the first place.

My father was eligible for disability benefits, thus as his child so was I. Regardless of being considered disabled or not. The thing is that I was never told by my parents about these benefits which were legally mine. I only found out years later after learning that my first car was financed not by my parents, but by Social Security benefits that expired two years later.

In essence I got the car, but not all the benefits. Probably the one and only real beef I ever had with my folks. But these were benefits based on my fathers cardiac disabilities- not my autism that no one knew about at the time. Did I have a right to be angry? A bit. Was it childish? I think not. I pretty much let it slide given the obvious. That while government paid for my car, my parents paid for my higher education.


 
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I apologize if this is confusing, but my query is this: was I actually disabled this whole time, growing up? Yet...I never knew about this? Or is it only once I was diagnosed with autism that I've become disabled, officially? There's a lot I don't remember about my childhood, but I feel I was kept in the dark about a great deal concerning the circumstance of my birth. I only knew that I had developmental issues but nothing severe, and certainly nothing physical was ever wrong with me.

For anyone wondering, I haven't been in large amounts of contact since moving out over two years ago. They've done a few things to warrant pure no-contact, which I'm working up to doing.
Simply put: Yes, yes, and yes.

You didn't change. You've just become aware of your autism and have a diagnosis now.

Now, if you are wondering if your parents knew and withheld that information, I am going to guess, "Not likely". Many parents will make every excuse in the world to come up with some sort of explanation for your behavior, and autism probably wasn't on their list of excuses,...my parents, for example. Furthermore, many medical professionals would not recognize autism, even if it was their own children or themselves. I work in a huge children's hospital, with autistic children sometimes, and yet my colleagues never recognized it in me after 30+ years. I take that back,...one person did,...someone with an autistic adult child.

My family, and some of my co-workers, developed a "moral diagnosis" of me. My parents and siblings rejected the idea of me having autism. My wife and children took a few years of acceptance.
 
I agree with @Rodafina that being angry harms yourself more than it hurts anyone else. With my family I just got over it and moved on. A mutual friend asked me one day why I was still angry at my parents and I told him truthfully, "I'm not angry, I just can't be bothered any more. They're too much hard work and give nothing but trauma in return."

I didn't make that break until I was in my 40s, I wish I had done it a lot earlier in life.

As for getting on the pension:

In Australia you are obliged to be registered with a recognised employment agency in order to get unemployment benefits, and wether or not you continue to get paid depends on how the employment agency reports on you.

As soon as I got my diagnosis I transferred my registration to a disability employment service. At this stage I hadn't worked (officially) for more than 12 years. I told the disability people that I had no intention of ever working again and that the whole point of me getting a diagnosis was so that I could get the pension.

They got me an interview with one of their staff who used to work for the Department of Human Services and she knew the system inside out. She was also autistic and very lovely to talk to. She printed out a list of specific forms that I needed to go with my diagnosis and she printed out examples of exactly how they needed to be filled out.

Then I had to go to a GP and get him to fill out those specific forms as per her instructions. The first GP I went to see got it wrong and I had to go see a second one, then she checked through all the forms and made sure everything was correct, and she sent them off for me along with her own letter of recommendation.

About 3 months after that a psychologist from the dole office rang me up and chatted to me for about 20 minutes, and that was it, I was on the pension.
 
Simply put: Yes, yes, and yes.

You didn't change. You've just become aware of your autism and have a diagnosis now.

Now, if you are wondering if your parents knew and withheld that information, I am going to guess, "Not likely". Many parents will make every excuse in the world to come up with some sort of explanation for your behavior, and autism probably wasn't on their list of excuses,...my parents, for example. Furthermore, many medical professionals would not recognize autism, even if it was their own children or themselves. I work in a huge children's hospital, with autistic children sometimes, and yet my colleagues never recognized it in me after 30+ years. I take that back,...one person did,...someone with an autistic adult child.

My family, and some of my co-workers, developed a "moral diagnosis" of me. My parents and siblings rejected the idea of me having autism. My wife and children took a few years of acceptance.
Thank you for validating my anger. Your words have been very helpful.

True that autism probably wasn't caught on early on, as this was the 90's. But still; 'disabled' means lots of things--autistic or not---but my anger is due to the fact that...well, I'm just confused on if they knew I've been disabled my whole life, but not with anything specific?
 
I agree with @Rodafina that being angry harms yourself more than it hurts anyone else. With my family I just got over it and moved on. A mutual friend asked me one day why I was still angry at my parents and I told him truthfully, "I'm not angry, I just can't be bothered any more. They're too much hard work and give nothing but trauma in return."

I didn't make that break until I was in my 40s, I wish I had done it a lot earlier in life.

As for getting on the pension:

In Australia you are obliged to be registered with a recognised employment agency in order to get unemployment benefits, and wether or not you continue to get paid depends on how the employment agency reports on you.

As soon as I got my diagnosis I transferred my registration to a disability employment service. At this stage I hadn't worked (officially) for more than 12 years. I told the disability people that I had no intention of ever working again and that the whole point of me getting a diagnosis was so that I could get the pension.

They got me an interview with one of their staff who used to work for the Department of Human Services and she knew the system inside out. She was also autistic and very lovely to talk to. She printed out a list of specific forms that I needed to go with my diagnosis and she printed out examples of exactly how they needed to be filled out.

Then I had to go to a GP and get him to fill out those specific forms as per her instructions. The first GP I went to see got it wrong and I had to go see a second one, then she checked through all the forms and made sure everything was correct, and she sent them off for me along with her own letter of recommendation.

About 3 months after that a psychologist from the dole office rang me up and chatted to me for about 20 minutes, and that was it, I was on the pension.
Hmm...both you and Rodafina have enlightened me, then. You're both right---holding onto my anger will only hurt myself, like drinking poison and expecting another to die. I can acknowledge that I've been wronged, but as you said---I cannot be bothered to interact with them anymore.

The process in Australia sounds way easier than here in the United States! Here it's just waiting, and one cannot really talk to someone unless they are on the phone--and this takes a couple of hours. I envy you!...but there's nothing I can do about it. :)
 
You always have the right to be angry. It’s just that getting stuck in anger is a disservice to yourself and potential happiness in your life. Anger is a valid feeling to have, but it is also an indication that there are things about your feelings to understand and possibly make some changes.

As to your specific question about whether you were disabled all along or only when you were diagnosed… it makes much more sense to think of it as something that was there all along. “Disabled,” however, could be interpreted many different ways, especially when SSI is concerned. I would think of it more as with your new understanding of yourself and how your brain works, you can gain more clarity on the challenges and the struggles you had growing up.

Understanding your childhood with great compassion for the little kid that you were, struggling with many of the same things you do now, could help to gain the understanding that you need to move through the anger, instill the boundaries with family members that are necessary, and move toward more peace of mind.
Thank you very much for clearly spelling it out! Perhaps one can pour their anger into action but not 'feeling' necessarily. It's...odd. Some days I'm just stoic, and other days...

That is helpful to read, also--both your second and final paragraphs. Maybe I just...have been feeding into a persecution fetish lately-- "Oh, I've been wronged in some way and I'll make the folks responsible pay for it!". Oh, my wildest fantasies. I guess this isn't something I should really feed into, but...the mind is the mind. Peace of mind, as you say, is something I should strive for; not revenge.
 
Depends on what you are really asking. Perhaps you should start here. I'd rather not attempt to parse the complexity of social security benefits, or the tight-fisted nature of a government bureaucracy. Perhaps the most notable comment to make is that obtaining Social Security disability benefits can be notoriously difficult, no matter what the circumstances may be. Where many applicants are turned down, only to pay for attorneys specializing in such processes who eventually secure benefits most people who are probably entitled to them in the first place.

My father was eligible for disability benefits, thus as his child so was I. Regardless of being considered disabled or not. The thing is that I was never told by my parents about these benefits which were legally mine. I only found out years later after learning that my first car was financed not by my parents, but by Social Security benefits that expired two years later.

In essence I got the car, but not all the benefits. Probably the one and only real beef I ever had with my folks. But these were benefits based on my fathers cardiac disabilities- not my autism that no one knew about at the time. Did I have a right to be angry? A bit. Was it childish? I think not. I pretty much let it slide given the obvious. That while government paid for my car, my parents paid for my higher education.


Thank you for your response; thus far it has been notoriously difficult. Outright I didn't qualify for SSI, but the decision to give me SSDI will be reached fairly soon. My spotty work history and psychological examination may aid me in this. Dealing with an attorney...that may be something I must do as well.
Oh, that's very interesting to learn of both you and your father! Oh...so they kept you in the dark about finances too, hmm?

I guess it's one thing I can't stand either--just being kept in the dark and no communication whatsoever about difficult topics. If parents aren't willing to talk with their children about difficulties or whatnot, they are just making their lives more difficult. At least, this may just be my projection.
 
*edit* Thank you all for your responses, which have been wise and insightful.

A bit more information to add: while beginning the initial process to file for SSI, it was discovered by me that there is an overpayment under my name. Money was dispersed to my parents for many years but prior to my initial diagnosis with NVLD. This is money which I owe, and it's one obstacle in the road to getting benefits. Some folks on SSI said that I don't have to pay it back; other say I have to. Granted, I don't know if I should blame my parents (was this a willful choice?) or the system (early 90's Internet; a flaw, perhaps? the mistake of someone?). Blame, perhaps, shouldn't be doled out right now; I should just focus on what I can do. Which...isn't much at the moment.

Has anyone else had to deal with something like this in the initial process? I'd love to hear any experience regarding this.
 
--but my anger is due to the fact that...well, I'm just confused on if they knew I've been disabled my whole life, but not with anything specific?

Anger can be useful, but holding on to anger usually isn't.

As described here, you can use it to get you started: find out the facts, consider them, and accept them.

But clearly you can't change the past, so remaining angry, even if things could have been better, won't help you at all.

Sounds too easy? Sometimes people can't just accept, and need help to get rid of negative emotions.
If that's the case, don't hesitate to get help.


PS: if you didn't receive that money, and it's a lot, it can't be unreasonable to ask that you personally aren't held liable for repayment.
Never trust a bureaucrat - it's much more likely their job is to refuse what you have a right to, than it is to find everyone who has a right to something and make sure they get it.
 
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For the hoops on getting SSI, see my blog post below. That you were identified in school increases the likelihood that you will get it (but I can make no such promise).
 
Anger can be useful, but holding on to anger usually isn't.

As described here, you can use it to get you started: find out the facts, consider them, and accept them.

But clearly you can't change the past, so remaining angry, even if things could have been better, won't help you at all.

Sounds too easy? Sometimes people can't just accept, and need help to get rid of negative emotions.
If that's the case, don't hesitate to get help.


PS: if you didn't receive that money, and it's a lot, it can't be unreasonable to ask that you personally aren't held liable for repayment.
Never trust a bureaucrat - it's much more likely their job is to refuse what you have a right to, than it is to find everyone who has a right to something and make sure they get it.
Your words are very helpful! thank you.
 
For the hoops on getting SSI, see my blog post below. That you were identified in school increases the likelihood that you will get it (but I can make no such promise).
Thanks very much for the article!
 
I had a few advantages when I threw myself on the system, the first one you can't do much about, I was 55 years old. Statistically at that age people start getting health issues and are more unlikely to return to the workforce so pensioning them off is more likely.

Second advantage is that I'm a talker. I speak quite well and I come across as friendly and helpful most of the time, as long as it's a face to face situation. Over the phone I'm almost deaf, so instead of using the phone I go and speak to people. Most often this has a positive impact.

Third advantage was that I figured out where to get the help I needed. A disability employment service, if anyone knows the ins and outs of the disability pension system it's going to be them. With a little luck like I had you'll get someone that has also worked for your welfare department in a similar role and knows the system backwards.
 
I will reply more to you privately, but if you were diagnosed with NVLD prior to age ten, it is most likely you or a representative could have proved yourself as a child disabled by SSA standards as soon as that diagnosis was learned and detailed by a medical professional with supporting information from your parents that would have satisfied the criteria to be approved as a child.

However, whether the SSA would have awarded benefits to you even if a disability could have been proved would have been another story, as that would have been dependent on the financial situation of the parents. If they had an income(s) more than that would allow you to qualify for SSI, as SSI is a financial-based disability program for those individuals that the SSA considers disabled AND with financial need, based on total household income, they would not even have looked at an application much or approved your case if the household income exceeded the allowable financial limits.

The question if you should be upset at your parents for not wanting to follow up on the NVLD, further medically documenting your limitations and applying on your behalf for benefits, depends on if they either knew you were like!y disabled at that time, could have received benefits at the time, or could have received additional help that was not already awarded you. Perhaps they either knew you could not financially qualify based on the household income, or they because of any conditions themselves just never even knew about disability benefits being allowable to children under certain cases.

If you as a child would have qualified for SSI because of limited household income that satisfied eligibility and because of a disabling condition that meets their disability standards, you as a child would have been awarded benefits retroactive starting from the date of the application, with the parent or caregiver most nurturing or able being designated the Representative Payee to handle those matters for you and to use that money for your needs.

You need not have had a specific Autism diagnosis then to qualify for disability benefits, as our youngest son was at age four or so just seen as nonverbal then, had numerous delays and sensitivities yet still got SSI benefits based on that and other !imitations I detailed. The process for determining eligibility in children is different than for adults, and so keep that in mind. For adults there is a five step process they look at, and I will include the link later. Having an updated medical report prior to applying with firm diagnosis, preferable mentioning poor prognosis, but at minimum mentioning moderate to severe difficulties with regards to performing day to day activities and having marked, moderate or extreme functional !imitations, that would be helpful. There are functional reports that can be filled out too by you, and/or Third Party forms too. SSA often does not advertise this.

It's a catch-22 in ways, as in order for a medical professional to document all that, you or a support person must detail that to them, as otherwise the SSA will say there is no reliable evidence. But, if you detail that to them, a non-specialist doctor may think you are more able, wise, social, or taking advantage of the system if you focus just on negatives or if too much detailed for limitations. A specialist though may be more understanding and instinctively ask the right questions, or they know how difficult is for many Autistics in the core component ways. The fact I,my wife, and our two children were able to get benefits though during the first stage and not having to appeal was largely because I knew the system, how to be truthful but focus on limitations and functional difficulties, in the forms I filled out, and to detail important delays for the children. I knew how to satisfy the rules as I know ourselves extremely well, love research and being detailed,factual and comprehensive in submissions there, being accurate, but using my obsessive and proactive nature there to our advantage.

Unfortunately, the system is rigged against those who do not have the same self awareness, belief, motivation, knowledge and persistence to not be swayed by their delays,any false statements by them, etc. Many cannot handle that stress of the lengthy, unfair, and rigid processes and procedures and give up. And heck many with conditions are not in that state of mind or have that specific ability to do such themselves or do not have effective lawyers,support person's to document everything to support disability according to SSA standards. The SSA is banking on this, so they often twist facts to support denial.

So,whether you should be upset at your parents should be your choice, but I just know I rarely worry now about things I cannot control as it's useless energy. This does not mean I felt I had to deal with my parents as an adult, but just that I never would have the answers why they did not fight hard for my rights to document our very dysfunctional states at that time. They were in denial,likely,or wanting to hide their wrongs. The anger I had at them was mainly because of the abuses and neglect,and medical neglect,as I do not think they had an SSI program then. I learned from my parents what not to do, and that is why we got benefits for our children at ages of around three and four respectively. All their needs are met, and any extra each month ABLE savings programs exist.

I am assuming when you suggested or mentioned you were denied SSI but have a pending SSDI case perhaps you applied for SSI and SSDI at the same time and the SSA either just thought your assets exceeded $2000 in allowable resources, not counting car and a home and/or your work credits were too much for SSI. Being denied SSI does not mean you are not disabled and you could be approved by SSDI in this case. You can thus get SSDI as an adult if you if you satisfy the 5 criteria in the next post, benefits retroactive I think six months from the date of the disability onset, or apply for DAC benefits if your disability condition began before age twenty two and your parent(s) contributed enough to the system, upon their retirement or death. For complicated cases, yes a lawyer is needed. For all our cases,I handled everything myself with no difficulty.
 
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Thank you for validating my anger. Your words have been very helpful.

True that autism probably wasn't caught on early on, as this was the 90's. But still; 'disabled' means lots of things--autistic or not---but my anger is due to the fact that...well, I'm just confused on if they knew I've been disabled my whole life, but not with anything specific?
In my own case things were really stacked up against me, having two parents who absolutely knew there was something "different" about me. Yet I was born into a 50s world where "autism" was often little more than an abstract concept even within the medical community.

A time when they could diagnose all my classic comorbid conditions to autism, but never autism itself.

So yeah, I get your frustration. But it's still best to try to be forward moving, and not get too angry.
 

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