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

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.
Your situation sounds similar to many which are written in Price's book Unmasking Autism, where he discusses a lost generation of folks who have autism but never had the resources to get diagnosed. I would have been really frustrated if I was in your situation.

Yeah; some days are easier than others. I can use my anger for good energy, or bad; we've all got two wolves in us, after all.
 
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.
Hmmm...I'm not entirely sure what to respond to first. I'm just so frustrated because there's a lot that I don't know and it's not like I'm going to call up my parents and have them help me with this. I cannot address what you've written about income because I don't remember. I'm going to guess it's a mix between my parents made too much money or they didn't know what benefits could have been given to me due to NVLD...

It probably doesn't help that I don't have a doctor, right? The only thing I've got is my psychological exam and proof of autism. One other issue with me and all of this is doing it on my own. I wish there was a way for me to just meet with someone from SSI and just...discuss it all in person to see what can happen. Doing things over the phone or online is a challenge for me. I don't want to give up--I know I cannot--but it's really really difficult.

You seem like a wise and good parent; your children are lucky to have you.

Your ending assumption is correct; at the time of filing, I had 'too much money' but that money is quickly disappearing. SSDI is my only option, as I don't want to have to keep suffering through retail burnout forever. Can you point out the page(s) of the criteria in the document? I've read it but maybe my early-morning brain missed it.
 
Hmmm...I'm not entirely sure what to respond to first. I'm just so frustrated because there's a lot that I don't know and it's not like I'm going to call up my parents and have them help me with this. I cannot address what you've written about income because I don't remember. I'm going to guess it's a mix between my parents made too much money or they didn't know what benefits could have been given to me due to NVLD...

It probably doesn't help that I don't have a doctor, right? The only thing I've got is my psychological exam and proof of autism. One other issue with me and all of this is doing it on my own. I wish there was a way for me to just meet with someone from SSI and just...discuss it all in person to see what can happen. Doing things over the phone or online is a challenge for me. I don't want to give up--I know I cannot--but it's really really difficult.

You seem like a wise and good parent; your children are lucky to have you.

Your ending assumption is correct; at the time of filing, I had 'too much money' but that money is quickly disappearing. SSDI is my only option, as I don't want to have to keep suffering through retail burnout forever. Can you point out the page(s) of the criteria in the document? I've read it but maybe my early-morning brain missed it.

Hello, I replied more at length to you just now through conversation with lots more details about the process there and how better to win your case. Usually yes, it is very helpful to have someone on your side to assist you with the process, one who can detail your limitations well, whether lawyer, family member or support person, and that will reduce the stress on you during the at times lengthy and unfair process. And yes, seeing a doctor is often seen by the SSA as needed, to justify attempts at trying to work to SGA levels. Also, they may respect the opinions of the medical assessment more if there were several visits or more that report or findings was based on, if the evaluation was not several hours for instance.

But, I was the rare case where I just had a CE (Consultative Exam) scheduled by the SSA, realizing through research CEs are usually always partial against the claimant, with I having no mental health medical history prior and yet I still got approved during the first non-appeal application stage, within four months, because my timidity and fear was obvious during that meeting with that doctor and he diagnosed just AvPD and Social Phobia then. I had no work history then at age twenty six, but just several-day or few- day jobs where I quit or was terminated. I detailed in letter or in that doctor form he gave me that day the functional difficulties for each job there. I did have an AS and BS degree then, but I detailed in letter I think how I was not functioning in settings there, and stating why those environments anyway were different from work settings.

Thanks for your comments too. I would not necessarily recommend though going to the SSA for any help, as they are partial, opposing parties. What you say or how you act there can be twisted or fabricated, or they can say by having such meetings implies you can function. Visit them maybe only if you need to do this and your dysfunction there is so obvious,from the little amount you say,what you say, any confusion or severe anxiety you show, etc. There are some in the system that are fair and may be understanding and empathetic to the situation if they saw your Autism on the surface, saw those difficulties, etc,but be aware most workers are trained to look for ability, not disability. Our many experiences show that. I have talked to dozens of person's about their treatment dealing with the SSA and DDS navigating the system and often unfair bureaucracy, helped about ten get their benefits with no charge, and did lots of research too, so I usually will give informed information.

Use my information and assistance to supplement other information though you find. I will inquire more privately, to see if it's best to get a lawyer now too. Of course I will assist you as best as I can privately too make things easier for you. Regarding that link I sent, scroll down after downloading it if need be, and it will mention the 5 steps, detailing each step with a paragraph or several. It will mention Step One, then give all that info. Then Step Two,and so on,up to Step 5. There are several pages there to scroll through,to see the important info in each step about how the SSA step by step evaluates ones disability.
 
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*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.

I just read this. From what it sounds like, but I could be wrong there, your parents may have applied to get expedited disability benefits for you as a child based on some other hospital or medical report(s) stating some obvious severe delay or limitation severity you had, based on some severe financial need, before an actual diagnosis was given. But then, after the parents either dropped the disability case, an official denial happened, or if the SSA found out the parents had resources that did not qualify for SSI, that is perhaps why they now said a repayment of those past benefits your parents received on behalf for you need to be repaid.

If they are correct about the overpayment, as sometimes they do not tell the full truth there or make mistake there, you can request a waiver by filing a certain form I believe. Tell them the issue happened many years ago, you had no knowledge of any payment they received on your behalf, you feel they are responsible for any repayment, that notice is exasperating your condition, and if applicable, that the repayment may pose some financial hardship. There could be some chance of they approve your request--but unlikely--as at best they'd likely work out a monthly payment plan.

Your gripe should be with the parents if this were the case, but as you are over age eighteen now they absolve the parents and would go after you when you filed a new claim as an adult. So, you could tell your parents to reimburse you or the SSa, or grin and bear what they did, and learn from that about them. I do not know the situation with your parents well enough to give comment on the desired course of contact or action with them.
 
I just read this. From what it sounds like, but I could be wrong there, your parents may have applied to get expedited disability benefits for you as a child based on some other hospital or medical report(s) stating some obvious severe delay or limitation severity you had, based on some severe financial need, before an actual diagnosis was given. But then, after the parents either dropped the disability case, an official denial happened, or if the SSA found out the parents had resources that did not qualify for SSI, that is perhaps why they now said a repayment of those past benefits your parents received on behalf for you need to be repaid.

If they are correct about the overpayment, as sometimes they do not tell the full truth there or make mistake there, you can request a waiver by filing a certain form I believe. Tell them the issue happened many years ago, you had no knowledge of any payment they received on your behalf, you feel they are responsible for any repayment, that notice is exasperating your condition, and if applicable, that the repayment may pose some financial hardship. There could be some chance of they approve your request--but unlikely--as at best they'd likely work out a monthly payment plan.

Your gripe should be with the parents if this were the case, but as you are over age eighteen now they absolve the parents and would go after you when you filed a new claim as an adult. So, you could tell your parents to reimburse you or the SSa, or grin and bear what they did, and learn from that about them. I do not know the situation with your parents well enough to give comment on the desired course of contact or action with them.
I don't know the full situation, but due to my premature birth status, over the course of seven years prior to my birth, money was given to my parents. I cannot be certain that it was for pure financial need, as the monthly total wasn't that much. A portion of it was paid back by them, but...after that, it was forgotten, and I've been left with the rest. When talking with SSI, they can see that I was a child at the time of the payments being given...

A lawyer is my next step (once I hear about SSI/SSDI benefits) . Unlikely? Oh, I hope not; I dread that. It would be too much pressure and I'd crumble. But...what will come will come.

To elaborate on my parents: I feel I've been left in the dark about everything in my childhood, which I don't remember much of due to trauma. My fiancee and myself are no-contact with them; they hear nothing from me and I never reach out to them either--I harbour too much resentment and anger regarding my autism, which was ignored in my childhood. I don't think they can bear to think that their son is disabled because it's a reflection on them. Ah, I should stop now; I'll never stop if I keep going--but you get the gist of why I cannot speak with them.
 
I don't know the full situation, but due to my premature birth status, over the course of seven years prior to my birth, money was given to my parents. I cannot be certain that it was for pure financial need, as the monthly total wasn't that much. A portion of it was paid back by them, but...after that, it was forgotten, and I've been left with the rest. When talking with SSI, they can see that I was a child at the time of the payments being given...

A lawyer is my next step (once I hear about SSI/SSDI benefits) . Unlikely? Oh, I hope not; I dread that. It would be too much pressure and I'd crumble. But...what will come will come.

To elaborate on my parents: I feel I've been left in the dark about everything in my childhood, which I don't remember much of due to trauma. My fiancee and myself are no-contact with them; they hear nothing from me and I never reach out to them either--I harbour too much resentment and anger regarding my autism, which was ignored in my childhood. I don't think they can bear to think that their son is disabled because it's a reflection on them. Ah, I should stop now; I'll never stop if I keep going--but you get the gist of why I cannot speak with them.
Your parents sound like mine in some ways. Refusal to admit we had conditions and to put our medical and other needs first. Mine often thought of themselves and were ignorant of many things in knowing how to raise children, and in communicating with us effectively and looking out for our well being.

Lawyers are not always needed for easier cases, and to be upfront, many are looking for ways to take advantage of clients for doing so little work and expecting their government allowable big portion of your retroactive benefits in return. Now may or may not be the ideal time to get a lawyer as a decision may happen soon if you applied in December.

There will be about a 30% chance you'd prevail during the first stage based on statistics there. But, if you had no SGA work history and just part time or limited work there and if you had a pretty good medical report stating your Autism functional and daily limitations well the chances like!y would be higher there though, and if your application answers showed much more limitations than abilities.

Remember, all the SSA has to do is to find one job in the economy where they say you can work to Substantial Gainful Levels. So, it will be the job of the claimant or their representative to show their conditions are such they cannot do that because of the nature of their conditions. The SA and DDS will look at past work and education, and your medically documented condition(s) and any 3rd party witness evidence, besides any extra evidence and claims supporting your disability you present.
 
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Your parents sound like mine in some ways. Refusal to admit we had conditions and to put our medical and other needs first. Mine often thought of themselves and were ignorant of many things in knowing how to raise children, and in communicating with us effectively and looking out for our well being.

Lawyers are not always needed for easier cases, and to be upfront, many are looking for ways to take advantage of clients for doing do so little work and expecting their government allowable big portion of your retroactive benefits in return. Now may or may not be the ideal time to get a lawyer as a decision may happen soon if you applied in December.

There will be about a 30% chance you'd prevail during the first stage based on statistics there. But, if you had no SGA work history and just part time or limited work there and if you had a pretty good medical report stating your Autism functional and daily limitations well the chances like!y would be higher there though, and if your application answers showed much more limitations than abilities.

Remember, all the SSA has to do is to find one job in the economy where they say you can work to Substantial Gainful Levels. So, it will be the job of the claimant or their representative to show their conditions are such they cannot do that because if the nature of their conditions. The SA and DDS will look at past work and education, and your medically documented condition(s) and any 3rd party witness evidence, besides any extra evidence and claims supporting your disability you present.
Ah..for me, it wasn't so much refusal for medical needs, but a lack of compassion and knowledge on how to discuss mental health issues. Either this is due to the generational viewpoint (they grew up in the 60's/70's) or they both have autism too. When interrogated about my depressive moods, my mother once asked if I was on drugs. Thanks, mom--that's super loving.

Very good point--a lawyer was only suggested to me if my need for SSI/SSDI was denied, which would help my case concerning the overpayment.

It's frustrating too because one thing noted in the examination was that no, my autism doesn't hinder my daily life or mundane tasks, but work and socialization are definitely hindered. Odd that someone may or may not be 'too autistic'. It's all autism and it's all hard to live with!

Yuck. SSA just sounds...scummy.
 
I could be missing something here, but trying to follow. I think you should not be angry and focus on being as independent, knowledgeable, and maintaining or improving your current overall quality of life. If you are no longer living with your parents, great! It seems they were kind of doing you some disservice even though they care/cared about you. They tried their best- so you can't blame them or yourself for that.
 

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