Who's "in charge?"

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I'm looking for some insight. This is more of a family type issue as opposed to a parental issue involving one child. I'm asking it her in the parent forum because I think parents are more likely to have dealt with this kind of confusion and lack of understanding where to begin. I'm hoping at least a few of you out there have been through this, and might have some idea of how to proceed from here.

A little background first:

Over the past several years we have been told that two of our kids are definitely on the spectrum, one with Asperger Syndrome, and another with PDD-NOS. I have recently been diagnosed with PDD-NOS and ADD. We also deal with ADHD and ADD in a couple of our boys. We have three sons. We are positive all three of them are on the Autistic spectrum. We've studied the issues extensively for over eleven years now, during which time I become convinced I have Asperger's, and though my own DX is PDD-NOS "officially," I can easily, I think, demonstrate that it IS, indeed, AS, from the final report given to me by the psychologist that evaluated me.

I have physical issues too, almost all of which I believe can be attributed to the stress of having lived with AS all of my life. I have been so sick for the past few years, mainly with IBS, but several other symptoms as well, I lost my last job because of it.

Financial issues have also come into play. For the past several years we have been living on inheritance received following the death of my mother. That money is almost ALL gone now. We now find ourselves forced to apply for assistance (I'm in the U.S. by the way...). The kids have been on medicaid since birth. We've never been able to afford insurance for them. At the moment, we are only applying for Food Stamps, but I know from past experience the HHS offices will be calling to see if there is anything else they can do. It's happened before, but we already knew at the time, due to our inheritance, we wouldn't qualify for anything more. Now, of course, that has changed.

One thing I know from past HHS experience that will come up is that, when you apply for Food Stamps, you either have to be working, looking for work, or disabled in some way, and they DO put you into a work search program if you are not currently working. I am not currently working, and though I have done some cursory searching (there ISN'T much available to anyone with my credentials around here), what I have seen available are not the kind of positions I would last long at. I'm fifty years old now, and have a very good idea of the kinds of work I won't last long at, or simply cannot do effectively.

Here is the issue:

I KNOW I am at least partially disabled, if not totally. I'm not going to get into the long drawn out explanation of how I know, because it's just too lengthy an explanation for purposes of this discussion.

The questions I have now all have to do with how to go about getting the right help from the right people. At the moment, I'm shooting for going through my primary care provider to start with. But she is a medical doctor, and not a psychologist or psychiatrist. The only reason I will start with her is because she suspected I was on the spectrum the last time I visited her, before I even told her.

I may be over thinking this, but here are my concerns:

Who do you "put in charge" of putting together a comprehensive picture of "What's wrong?"

I mean, this is not only a complicated problem where I alone am concerned (I have a mental disability that has been indirectly causing many physical symptoms, which, in turn, exacerbate the mental problems ~ to the point I can't seem to make SENSE of anything!). I'm a terrible problem solver! I can identify problems, and even figure out in my head what needs to be done to an extent, but I have never been able to translate those "solutions" into reality! In short, I have never been able to take what I can see in my head as what is needed to be done, and make it a reality in the real world!

Much of that inability stems from the necessity to influences other people to do what I need. The problem is, I can't seem to communicate what I need for them to do, or I can't seem to communicate the right things to the right people, or BOTH!

AND, as I said, this ISN'T just about ME! There are dynamics involved here that have to do with the problems I already have being exacerbated by the problems my sons and wife also have. Our problems all seem to feed off each other, in viscous circles to the point that our life has already more than once been sucked into chaos.

The only thing I am totally clear on is the fact that any "solution" that only focuses on one aspect or another of our lives, whether that be on one person in our family, or one set of symptoms in that person, will ultimately result in NO tangible results, or, if any results at all, only temporary in nature. The only way we will EVER see any real results that we can honestly call "success" is if the ENTIRE family is considered, along with ALL of our physical and mental issues.

Thus my question.

"Who's in charge?"

Who the heck do you put in charge of this kind of thing? Your medical doctor? A psychologist? Who?

Do me a favor though. Don't bother telling me to take charge myself. Though I know, in the beginning at least, I have to, but at some point, somebody ELSE will HAVE to take over. The reason is simple. To reiterate, I am a terrible problem solver! I can solve problems, but it usually takes me so long to do it with real life problems, I end up with more problems than I had to begin with. Before long, it's so overwhelming I can't even begin to organize them, much less deal with any of them. Some might attribute this to procrastination, but that really is NOT the problem. The problem is, I am slower than death at everything I do!

My question is, "Who does this?"

Where do you start looking for somebody to help you organize issues, and keep them organized so that you can actually deal with them effectively?

EDIT: Just an additional tidbit:

We have also recently discovered that some of the "diagnoses" we thought our kids have, were never actual diagnoses at all. This is kind of angering since we specifically asked about them, and were told "Yes, your kids have "X," and "Y" and "Z."

Upon reading the actual written reports from the doctors that told us this though, we discovered that there never were any official diagnoses, but they were only recommendations for the schools to "treat them as if they have "X, Y and Z."

So now we may have to deal with getting somebody to make an actual diagnosis for each of these, when we THOUGHT we already HAD one!

*Insert choice cursing here...*

Sounds like your kids had assessments done at school, which can get you the services you need at school, but not an actual diagnosis. If you feel like you have needs not being met through those services, you can seek out formal diagnosis through a Psychologist or a Developmental pediatrician. It sounds like you need support for the whole family, which makes me think you might want to try to find some kind of clinic that specializes in autism spectrum disorders. It seems like a lot of those places have family support available. I'm new to all of this, so I am not super experienced in all of this, but that is what I would do if I was in your shoes.

Good luck!

Thanks misstippy.

We actually are hooked into a local clinic that does specialize in Autistic disorders, but there's a bit of a catch. One of their psychologists works with the family as a whole, but she actually works for the schools, not us. Her main focus, officially, is kind of a liaison between us and the schools. She's great, because she has a daughter on the spectrum, and so far is the ONLY person who has ever recognized what a predicament we are in.

I AM on the spectrum, diagnosed by one of her colleagues at the same clinic. I paid for that myself.

The catch 22 we find ourselves in right now is that we are OUT of money, have NO insurance, and NO assistance from the government, other than Medicaid for the kids.

We need to pull together a team of doctors and other professionals who recognize the problems that come from so many of us being on the spectrum, along with ADD and ADHD thrown into the mix. "What we have here, is a failure to communicate!" (as the prison guard said in Cool Hand Luke). But it's much more than just that. We are all also just awful at keeping organized.

I've only just recently realized we're NOT procrastinators. What we are is really, REALLY bad at getting anything important done in a timely manner, not because we put it off, but because we are much SLOWER at it than typical people without ASD's and ADD. It's not that we don't know how to be organized. It's that in practice, we are incabable of it. In the same sense that a lot of people know how to swim, most could not swim a mile if they had to, but would drown instead. The comparison is a good one. We are in a world of people who COULD swim a mile if they had to, but we can't. We know how to swim, but swimming as far or as fast for as long as most can, is not possible for us.

And that creates a catch 22 situation for us. What we NEED to do to get the assistance we need, is seemingly, and more than likely, beyond our capability. We know we have to get the ball rolling on our own, but we've got to find people that can take over, and keep it rolling, and we have no idea who to begin with.

At the moment, I'm taking on the mentality of knocking on every door with as much, and maybe even too much information about our situation. Maybe more than certain agencies or clinics need to, or want to know. I don't see any other way to go about it. I don't know who needs or wants to know what, so I'm telling them all everything I can think of until [hopefully] one of those doors finally opens.

I'll tell you, being in this situation whilst hearing people complain about the health care plan, one thing seems clear. I don't hear anyone complaining about it that doesn't HAVE any health coverage.

But, I digress.

What has frustrated me in the past in similar situations, none of which have ever been as serious as what we find ourselves in now, is hearing people we ask for help, say things like, "What can we do for you?" or, "What would you like us to do?"

Hell, I DON'T KNOW! That's why I'm here talking to YOU!

I suppose it is probably just a matter of repeatedly pounding on doors, ringing phones, and appealing every denial, NOT taking no or "We don't know what we can do for you" for answers.

I'm just hoping somebody here has been through this and figured out how to get the necessary assistance. So far, it's like needing a t-bone steak and getting nothing but fat scraps tossed at us here and there. Nothing of real substance so far.

I hate to sound as unhelpful as the people you went to for help earlier, but I am in an equally confused state. What sort of help are you looking for exactly? Are you looking for somebody to help you work out disagreements in the family? If that is the case then a family therapist may be helpful. Are you looking for somebody to help you stay organized? If that is the case you may want to develop an external source of organization (i.e. calenders, day planners, reminders, PDAs, etc.)

I might be able to provide some more advice if you describe the problems or the situations, but simply saying that you have a complex problem, and then asking who would solve it is leaving me stumped.

Although mostly only concerning myself, I face the same challenge. We need advocates who "know the system" from various angles or vantage points and who know what to do, when to do it and how to do it. In my own case, I am hoping a disability lawyer I am scheduled to see this week will know at least some of that, and I am also hoping he will be able to point me toward a doctor who is willing and able to observe, diagnose(?) and document a comprehensive picture of my overall situation (disability).

All of the above, and a whole lot more, when you come right down to it Tracker. One of the biggest problems with my entire situations is that I have learned I cannot always trust my own instincts and apparent knowledge. And that's a huge problem because I'm the only person on earth who has all the "pieces" to the jigsaw puzzle. I can put them all together in a way that makes sense to me, but no one else seems to be able to see the whole picture. Anyone who I involve wants to know exactly which part of the picture I want them to help with. Well, I have NO IDEA where they would fit best, and don't know any other way for them to figure it out unless I can get them to SEE that whole picture. Most of them don't want to. Most want to zero in on one or another of the most obvious surface problems, but never deal with the underlying cause of any of them. That, I now KNOW, is a complete waste of time.

Doing anything other than digging very deep, learning what I CAN change, adapt, and control, and what I really do not control is essential to the process. So far what has been done has amounted to nothing more than sticking band-aids on the obvious, and never dealing with what CAUSES the obvious. All have been temporary fixes that resulted in temporary results. I'm not interested in temporary fixes anymore. They are a waste of time and money just to end up right back where I started every single time.





Agreed. The hard lesson I guess I'm finally learning to accept, like it or not, is that there ARE no advocates more vested in our success than ourselves. I've reached the point of accepting that I'm simply going to have to pound on every door I can think of, and many I haven't thought of yet, never accepting no for an answer.

It's that simple, and at the same time, that complicated.

I'm quickly becoming more and more accepting of the fact that the only way what I need will ever happen is if I make it happen. I'm thinking using AS traits may end up helping if I can just figure out when to be an A-hole, and when to use my logic. Hey, what choice do I have? I have to use the tools life has handed me, don't I?

I.E. "Who's in charge?" would be me, and can't really ever be anyone else.

Mr. Xxxx, have you checked with your state's department of Health and/or Human Services website? Try searching the word "autism." (IL is just starting to put together their site, so they don't have anything up as of yet.) See if they offer a specific direction for you to go; many states also offer some kind of support for the medical needs of kids whose families are struggling financially. These are the same people managing your food stamps, etc. so be prepared for things to be obfuscated and to take a long time...but if the benefits are there and you qualify, it is probably your best bet.

Next, there are often faith-based organizations that offer services on a sliding scale. I'm a bit "allergic" to faith-based organizations, myself - but we did get some counseling we needed for a rate we could afford, without the religion coming into play.

To the second part of your problem - we are finally finding answers that make sense in a multi-disciplinary program that is headed by a pediatric neurologist. Although the neurologist is kind of in the background, I get the impression that he is the one who keeps everyone in this program sticking with things that work and prevents them from straying into untested therapies.

is sounds like what you are looking for is someone to basically handle all the information, applications, appointments, figuring out what needs to be done, who needs to be called, etc. do i have that correct?

in my household, that person in charge would be me. i have always taken vastly more of the family organizational role, and since we discovered my SO is autistic, ive taken on even more. i am absolutely not organized myself, i have my own undiagnosed issues with either ocd or ocpd, and it has never been an easy role for me. easy or not, it has to be done, and nobody else was doing it. i rely on lists, sticky notes, calendar, my cell phone's calendar with alarm, and my anal retentive filing system. i MUST keep everything insanely filed, or i lose all control. i have a manila folder for everything. my desk is drowning in manila folders. it used to be drowning in loose papers, so at least i am getting better at this job.

i dont think you are going to find anyone out there willing or able to do this role for you. its simply not their job. some of those you come across, as you are already finding out, are wiling and able to help with ONE chapter of the book, but they are not equipped to do it all. sometimes you will be lucky to find someone to help with even one.

is your wife able to fill this role? if not by herself, do you think the two of you together could cover it? you two are the absolute best people to do this as you know your family best. if you cant do it together, is there a family member who lives nearby who would be able to help you?

states vary quite a bit in how their human services work. best way to get to know the services is to visit your states human services website. when we moved to a new state we were able to get care providers medicaid coverage. its not as full as the childs medicaid, but when you have no coverage at all, its invaluable. we couldnt get this in the state we lived in previously as their income limits were different. as for requirements to seek work, that is usually a requirement when you are receiving a cash grant. its been a good 13 years since i had to be concerned about that so i am not up to date on everything, but i dont think it applies when you are only getting medicaid or food stamps. something to look into. you also only had to be employed for 20 hours a week, and not at all if you were the only parent in a home with children under a certain age.

if finances are severe, and it sounds as if they are, do consider applying for SSI. i made the decision to file for my son because my family was sinking financially and it has had everything to do with autism. not just our sons needs, how much time he is home from school and the requirement someone be available to care for him every day, but also my SO's deteriorating work situation that is due to autistic deficits (we are still trying to get him diagnosed so he cannot file for any aid for himself). i already work full time but dont make enough to completely provide for a family of 5. i didnt like having to apply, i dont like feeling like i cant take care of my family, but i'd rather swallow pride and provide for them, than see them lack in any way. i was shocked to learn it can take 4-5 months for the application process. we were extremely lucky and they did a quick decision in our sons case, i submitted the online portion of his application on Nov 7, called that day to set up a phone interview for Dec 1, had the phone interview, and they told me i should find out within 120 days. they called me on Dec 2 to tell us he was approved. took a couple more weeks to get everything finished, but he received his first benefits last week. i am still struggling with the need to even apply for that assistance, but at least my family is afloat.

i do understand what its like to be asking everyone for help, and none of them seem to know how to help you. when trying to get our son diagnosed, we had been waiting for the school to get the evaluation ball rolling for 5 months, so finally we took him to his pediatrician, and explained we suspected autism. the ped looked at us and said, "What do you want from me?" i felt pretty helpless and screwed right then. if the ped cant tell you what to do, how was i suppose to figure it out?

autism is like going back to university for a degree you never knew you needed.

We are already in contact with HHS in our state, and have dealt with them in the past, just not about this specifically, however it will now be part of the discussion. That is but one avenue we are just beginning to investigate, and we already know they are not exactly the "go to" people, but will have to be part of the overall picture at the very least.



There are some in our area as well, and like you, I'm a bit "allergic" to them as well for personal reasons I would rather not get into here. Suffice to say I already have some of my own faith based support that precludes dealing with any others available. It's not specifically centered on spectrum or ADD issues, but is what it needs to be.



Actually, our state has had an "Autistic commission" for about a year and a half now, who's mission it is to investigate the severity and needs of the Autistic community here. It is fairly new however, and is so far mostly focused on childhood Autism, which isn't unusual. The medical and psychiatric community though, appears to be well aware of a very important need for the inclusion of treatment programs for adults with Autism as well. There are already quite a few putting forth efforts to form associations entirely focused on adults with spectrum issues. I've already learned of more than one sponsored by local colleges and medical schools. Those as well are fairly new and not yet well formed, but the signs are there that many professionals are taking it very seriously. Looks like we are learning about all this at the "embryonic" stage for most of them. We are keeping tabs on their development through some of the doctors we are already in contact with regularly, so we hope to hear more good news concerning this kind of thing.

That all sounds like good news and that things are headed in the right direction. Re: the state support - it's a big gigantic pain in the you-know-where to get it, but the good thing about it is that once the wheels are rolling, it's predictable and follows a stable set of rules. I hope you find what you need there.

Not sure if this is what you were asking, but if I were having trouble managing the overall big picture, and I had a connection with a faith-based organization that was offering support - that would be who I'd ask to help with administration; see if they can help you structure a way to follow your possibilities and give you help in actually doing it.

It sounds to me as though the thing you need most is a definitive diagnosis for yourself and your children, so that you've got the paperwork to proceed with other stuff - is that correct? The Autism Society has a referral service with an 800 number, they may be able to help you figure out how to get these with all the other considerations you are facing: http://www.autism-society.org/site/Page ... earch_info

This is what I am currently resigned to accept. It has to be me, at least for now. but I am also realizing just recently that to expect myself to take this all on over the long haul would be a huge mistake.

When I recently received my diagnosis (about three months ago), ADD was part of it, and though the doctor mentioned in the report that she felt is was probably more severe than spectrum issues, I didn't think much of it (probably because I have spent so much time researching AS for the past decade). About a month ago though, I couldn't sleep one night and stumbled onto a PBS broadcast called "ADD and loving it." While watching it, I had more "AHA!" moments than in all of the eleven years of researching AS. There was a time I thought AS explained nearly everything I couldn't before explain in my life. With the added awareness of ADD just from that documentary, and putting it all together with my AS awareness. suddenly EVERY puzzle piece fit together. NOTHING was unexplained anymore!

I now know exactly which problems I have are caused by AS and which are caused by ADD. The problem is, while I have learned to adapt in many ways so as to mask my AS quite well, I have NOT learned to mask my ADD at all. What this means is that I am totally inept at keeping things organized, and managing priorities. I can manage over a short period with certain projects, but cannot keep it up for long. The reason for this is that in order to maintain any one project this complicated, I have to put ALL of my focus into it, pushing EVERYTHING else not just to back burners, but OFF the stove altogether. Obviously, I can't do that forever, so I am going to need somebody to step in and take over some of it at least until I can learn to do it all on my own. GETTING organized isn't a problem. STAYING organized on a daily basis, IS.

I know I can get things started, but the focus will quickly have to become being taught how to keep it up. Meds will probably be part of that, but training will also have to be there as well. Thankfully, training for that sort of thing with ADD in mind isn't all that new a field. There are already quite a lot of good methods developed for that. Adapting that with spectrum issues in mind will be the real challenge.



Actually, there are people out there who do just this sort of thing, but it's not about taking over the organizational aspects of your life. It's about teaching US how to take control ourselves. They're called Life Coaches. Unfortunately, since financial issues are part of the current problem, paying for a Life Couch is an issue. I have heard that in some rare cases people have managed to get aid to help pay for Life Coaches, if only temporarily. But then, a Life Coaches job isn't supposed to be permanent anyhow. The whole point is to empower the client.

For now, it is, and has to be, me and my wife. We will most certainly do our damnedest to make a good case for the financial sense Life Couching would make. If it's effective enough, it could just get us off assistance permanently, and, by virtue of the influence it might have on our kids, keep them from ever needing it, or at least keep their dependence to a minimum.



Sounds like you understand intimately what we are facing right now. Except for the details, this all sounds so familiar.



Sorry, I just have to laugh now, I've been through this so many times already. More than once for each child.

Now, we are looking at not only each child being treated fully, but the entire family as a whole. Every one of us has issues, possibly ALL on the spectrum, and more than likely ALL with ADD, and severe ADD at that.

It is that feeling of helplessness that I've been anticipating, and that led me to post this. I'm now realizing we can't afford to allow ourselves to feel helpless for even a moment, otherwise we'll never get anywhere. That is why I'm leaning more toward not worrying about what anyone thinks, even if it might mean acting inappropriately at times, as long as it means keeping the ball rolling, people listening, and getting the aid and REAL help we need.

Right now, the task is documenting EVERYTHING, even if it's just our own opinions. Developing a time line, and relationships between our own individual problems, as well as how all the various problems affect interpersonal relationships between us all, AND how it all affects our individual and group abilities to manage life in general.

It's pretty complicated to explain, because so much of it is unique to our circumstances. All that documentation will go to my PCP, our pediatrician, and any counselors we might be directed to. That alone is a daunting task. I've managed so far to break my own portion of that from twenty-five pages down to six. Now there are four more to do (for my wife, and three boys), and yet another, more complicated one that outlines how we all affect each other.

The dynamics are SCARY!

Well, it may sound as if we are kind of new to all this, but the truth is we aren't. We have, and have had "tentacles" out there with several different agencies. We already have a pretty good idea of "who does what" around here, with some few exceptions. We are learning of a few we weren't aware of until now.

Each agency though, fills a specific community role. Figuring out exactly what that role is, and how it applies to us specifically, is something we've had to figure out on our own.

Where things get "foggy" though, is in the fact that none of them plays any kind of "oversight" role over all the others. My hope is that among one or another of these, or one we haven't yet dealt with, is an INDIVIDUAL who might act as a kind of service coordinator. That, in effect, is what I'm hoping to find. Someone who can fill that role until such time that we have learned to do it on our own.

For now, it simply HAS to be us. It seems these are the questions we are going to have to ask every individual involved every time we meet with them, until we start getting answers.

Right now, WE are the only people who understand the "big picture." No one else does. And that's a problem.

A social worker? I'm not sure how you go about getting one, but that's what they're supposed to do.

Yup. I have thought of that. Thanks. Truth is, even though I've known a few (family friends) over the years, I've never really understood exactly what they do...

I'll probably be finding out soon though.