Jump to content

Menu

Adult with Asperger's vs. Autism


Recommended Posts

My BIL was recently diagnosed with Asperger's. He's in his forties. I'm glad his doctor finally recognized his behavior was on the autistic spectrum, but I question if Asperger's is the correct diagnosis. I strongly think he fits the description of autism, not Asperger's.

 

Are there any "advantages" to having a diagnosis of Asperger's rather than autism? Is it easier for parents to hear Asperger's? Would it be harder for someone with autism to live on his own compared to someone with Asperger's?

 

Does a correct diagnosis really matter for treatment in an adult?

 

And is this any of my business? This is my husband's brother. FIL recently died. MIL is healthy but getting older.

Link to comment
Share on other sites

Thanks Michele. Yeah, I know there are strong similiarities.

 

One reason why I think it's autsim is that BIL had speech delays. I found this statement about Asperger's on a website for the Autism Society: "One of the major differences between Asperger's Disorder and autism is that, by definition, there is no speech delay in Asperger's."

 

According to MIL, when my BIL wasn't talking at the age of three, she took him to a speech therapist. He had speech therapy for many years. Maybe his current psychologist doesn't know that, or maybe he does and went with Asperger's for some other reason. :confused:

 

Maybe it doesn't matter. But I wonder if there might be some advantage of one diagnosis vs. the other? And I also wonder if BIL's doctors really know what they are doing with him.

Link to comment
Share on other sites

Ok, I'm going to play really dumb here and ask why does it matter? Either way he's on the spectrum. Either way he's opening his mind (and his family's mind) to his needs and causes of his struggles. Does it really change anything if he's labeled as having one or the other? Didn't they recently say they're eliminating the diagnosis of aspie and taking it all to being shades of autism anyway? I thought that was what I read.

 

Did he go to these docs of his own volition? (as in, is he independent?) Then really you don't want to go there asking yourself if his doctors are doing a good job or not. That's his business.

Link to comment
Share on other sites

Thanks Michele. Yeah, I know there are strong similiarities.

 

One reason why I think it's autsim is that BIL had speech delays. I found this statement about Asperger's on a website for the Autism Society: "One of the major differences between Asperger's Disorder and autism is that, by definition, there is no speech delay in Asperger's."

 

According to MIL, when my BIL wasn't talking at the age of three, she took him to a speech therapist. He had speech therapy for many years. Maybe his current psychologist doesn't know that, or maybe he does and went with Asperger's for some other reason. :confused:

 

Maybe it doesn't matter. But I wonder if there might be some advantage of one diagnosis vs. the other? And I also wonder if BIL's doctors really know what they are doing with him.

 

 

Well, our ds has a diagnosis of Aspie and he was speech delayed. FWIW.....most psys will tell you that there is no black and white in diagnosing and it is all grey. He is also often referred to as high functioning autistic. I personally think he is more Aspie than anything else.

 

In the long run, though, it won't really matter. He needs to have documentation of a disability to receive state assistance. 40s seems a little extreme for qualifying though for something like this. But I really don't know a whole lot b/c we are on the beginning of this journey with an adult.

Link to comment
Share on other sites

A couple of thoughts:

 

First, a diagnosis in general is better than none. I came to this conclusion from reading a number of biographies of people diagnosed as adults, often in their forties (Tim Page's Parallel Play is my favorite, but a number have been published in the past couple of years); and without exception they all express the most tremendous relief at receiving a diagnosis, because this means there is something wrong physiologically, neurologically, and not that they are terrible or incompetent people. This is one of the most pressing reasons for a diagnosis, in my opinion.

 

Second, people who are diagnosed with autism as young children often modulate into HFA or Asperger's diagnoses when they're adults. This is not because their autism is "cured" or has somehow become less, but rather because they have learned coping mechanisms -- Temple Grandin talks a lot about this, how she studied people like an anthropologist, and imitated their behavior so as to pass for closer to normal. Kids who seemed to be fairly high-functioning in early childhood can slide the other direction on the scale and become more fully and complexly autistic as adults. Charlotte Moore has written about her two sons in her book Sam and George; both followed this trajectory.

 

And third, it is possible that as brain chemistry and genetics becomes more understood, there will be other issues linked more with classic autism than with HFA or Asperger's. Seizures, for instance, seem to be more common among classically autistic people than Aspies (at least this is how I understand it). Someday scientists might be able to pinpoint which people are more likely to have gluten and digestion problems along with their autism and which will not. This won't matter for an adult who is now in his 40s, but it might matter for his children or grandchildren, or even for more distant relatives who are part of the same gene pool. We just don't know yet.

 

On the other hand, worrying about precisely where someone falls on the spectrum is to some extent a futile exercise, with knowledge of the brain where it is right now. As Michele says, there is so much overlap among and between symptoms and syndromes. Sometimes it all just seems so tangled that it will never be possible to understand it all.

Link to comment
Share on other sites

My brother was disagnosed with Apsergers in 2006 at the age of 34. It came after a lifetime of struggle and difficulties. He has an above average IQ but the social skills of a 5 yr old very often. He also has difficulty with managing money, personal care, and finding employment. The diagnosis came after long testing and evaluations by multiple medical and psychological professionals. He had struggled since he was in preschool.

 

Since my brother also had a long history of unemployment due to his poor social skills, and a local rehab training facility rated him as unemployable even with their specialized training and and job finding personel, it was finally recommended to my parents that he apply for disability.

 

When he applied for disability, he had to go thru much of the evaluation and diagnosis routine all over again with the 'approved' professionals. At the end of that long process he was given the diagnosis of Autism. When we questioned this, the professional told us that his early childhood history showed language difficulties before age 3 and by the criteria used by the gov't to determine need, he had autism, not Aspergers. The diagnosis of Autism was then explained to be considered more serious and more debilitating and therefore making him more likely to qualify for assistance than the Asperger's label.

 

That being said, it still took 2 years for him to qualify for disability. Fortunately my mother had kept every record in detail since he was a baby and first began exhibiting problems.

 

Because he was an adult being diagnosed I do believe he missed out on many oportunities that children have today that lessens the severity of the characteristics. However, my brother began receiving special services at age 2 and received the best that our community could provide as he was growing up. No one knew what to call his 'issues' other than 'nonspecific learning disability' and gave advice accordingly. My parents kept being told that he would someday mature and outgrow the quirky and annoying behaviors. It didn't happen even when their constant and direct interventions.

 

Having a diagnosis, even as an adult, has done several things for my brother. One, he doesn't feel stupid any more. He understands now that his brain works differently and we aren't 'picking on him' about everything. He is sort of more willing to work on social skills and such than he was before. The diagnosis also helped my family members realize that he isn't going to grow out of the behaviors and that he may always need family help in one way or another to be successful. When my brother recently found himself in some legal trouble over his mannerisms and social skills, his attorney was able to show his diagnosis and explain the meaing of the diagnosis to help the other party understand him.

 

 

Is it your business?? Depends on how well your BIL functions in society IMO, and how much help he wants. I am very involved in my brother's affairs now. I never was before. My parents have his assistance coming to a trust fund now and I am listed on the trust fund as one of the people who can make a decision. From this trust we pay his rent/utilities and other bills in addition to giving him a generous allowance that he can manage. My parents are in poor health and this was their idea. They wanted to make certain that he could remain in his apartment and that his needs would be met even after they die. My brother also asked me to be involved. He was tired of the stress and frustrations of trying to do it himself.

Edited by Dobela
Link to comment
Share on other sites

My brother was disagnosed with Apsergers in 2006 at the age of 34. It came after a lifetime of struggle and difficulties. He has an above average IQ but the social skills of a 5 yr old very often. He also has difficulty with managing money, personal care, and finding employment. The diagnosis came after long testing and evaluations by multiple medical and psychological professionals. He had struggled since he was in preschool.

 

Since my brother also had a long history of unemployment due to his poor social skills, and a local rehab training facility rated him as unemployable even with their specialized training and and job finding personel, it was finally recommended to my parents that he apply for disability.

 

When he applied for disability, he had to go thru much of the evaluation and diagnosis routine all over again with the 'approved' professionals. At the end of that long process he was given the diagnosis of Autism. When we questioned this, the professional told us that his early childhood history showed language difficulties before age 3 and by the criteria used by the gov't to determine need, he had autism, not Aspergers. The diagnosis of Autism was then explained to be considered more serious and more debilitating and therefore making him more likely to qualify for assistance than the Asperger's label.

 

That being said, it still took 2 years for him to qualify for disability. Fortunately my mother had kept every record in detail since he was a baby and first began exhibiting problems.

 

Because he was an adult being diagnosed I do believe he missed out on many oportunities that children have today that lessens the severity of the characteristics. However, my brother began receiving special services at age 2 and received the best that our community could provide as he was growing up. No one knew what to call his 'issues' other than 'nonspecific learning disability' and gave advice accordingly. My parents kept being told that he would someday mature and outgrow the quirky and annoying behaviors. It didn't happen even when their constant and direct interventions.

 

Having a diagnosis, even as an adult, has done several things for my brother. One, he doesn't feel stupid any more. He understands now that his brain works differently and we aren't 'picking on him' about everything. He is sort of more willing to work on social skills and such than he was before. The diagnosis also helped my family members realize that he isn't going to grow out of the behaviors and that he may always need family help in one way or another to be successful. When my brother recently found himself in some legal trouble over his mannerisms and social skills, his attorney was able to show his diagnosis and explain the meaing of the diagnosis to help the other party understand him.

 

 

Is it your business?? Depends on how well your BIL functions in society IMO, and how much help he wants. I am very involved in my brother's affairs now. I never was before. My parents have his assistance coming to a trust fund now and I am listed on the trust fund as one of the people who can make a decision. From this trust we pay his rent/utilities and other bills in addition to giving him a generous allowance that he can manage. My parents are in poor health and this was their idea. They wanted to make certain that he could remain in his apartment and that his needs would be met even after they die. My brother also asked me to be involved. He was tired of the stress and frustrations of trying to do it himself.

Thank you so much!!!! :grouphug: Thanks to everyone!!!!

 

It may not matter what the precise diagnosis is at this point, but I thought it might some day. If he qualifies for more help with an autism diagosis vs. Asperger's, it might eventually matter if he requires more help.

 

BIL lives is his own apartment, but not "independent" in the sense that most people think of as independent. He has a low level job that is not enough to support him. It took years before he was able to find a job that he could keep, and that only happened with FIL helping out a lot with communicating with his employer. FIL and MIL did/do various other things like mentioned above, including a trust fund and they are the ones who saught counseling. FIL passed away earlier this year. At this point, MIL is in good health, but she's getting older.

Link to comment
Share on other sites

When he applied for disability, he had to go thru much of the evaluation and diagnosis routine all over again with the 'approved' professionals. At the end of that long process he was given the diagnosis of Autism. When we questioned this, the professional told us that his early childhood history showed language difficulties before age 3 and by the criteria used by the gov't to determine need, he had autism, not Aspergers. The diagnosis of Autism was then explained to be considered more serious and more debilitating and therefore making him more likely to qualify for assistance than the Asperger's label.

 

That being said, it still took 2 years for him to qualify for disability. Fortunately my mother had kept every record in detail since he was a baby and first began exhibiting problems.

 

Because he was an adult being diagnosed I do believe he missed out on many oportunities that children have today that lessens the severity of the characteristics. .

 

Thank you for posting your brother's experience. The bolded part is the stage we are in right now. Getting him evaluated and diagnosed by the "state" will open lots of opportunities for him to function more independently. For exammple, there is a busing service in our county that he will be able to use for $6 one way to be picked up and dropped off at any location within the county. That will really help with employment b/c at this pt we do not want him driving, etc.

 

I wish a diagnosis had helped our ds accept himself. It hasn't. He doesn't want to change and he is just plain angry that he isn't like everyone else. A large part of it can just be the fact that he is 18 and wants to emulate his older brother's life and can't, and yet, he sees his younger siblings getting ready to.

 

OP, best wishes in your being a positive influence in your bil's life. It may have lots of bumps along the way and it may be under appreciated at times, but it will be worth it.

Link to comment
Share on other sites

A couple of thoughts:

 

First, a diagnosis in general is better than none. I came to this conclusion from reading a number of biographies of people diagnosed as adults, often in their forties (Tim Page's Parallel Play is my favorite, but a number have been published in the past couple of years); and without exception they all express the most tremendous relief at receiving a diagnosis, because this means there is something wrong physiologically, neurologically, and not that they are terrible or incompetent people. This is one of the most pressing reasons for a diagnosis, in my opinion.

 

Second, people who are diagnosed with autism as young children often modulate into HFA or Asperger's diagnoses when they're adults. This is not because their autism is "cured" or has somehow become less, but rather because they have learned coping mechanisms -- Temple Grandin talks a lot about this, how she studied people like an anthropologist, and imitated their behavior so as to pass for closer to normal. Kids who seemed to be fairly high-functioning in early childhood can slide the other direction on the scale and become more fully and complexly autistic as adults. Charlotte Moore has written about her two sons in her book Sam and George; both followed this trajectory.

 

And third, it is possible that as brain chemistry and genetics becomes more understood, there will be other issues linked more with classic autism than with HFA or Asperger's. Seizures, for instance, seem to be more common among classically autistic people than Aspies (at least this is how I understand it). Someday scientists might be able to pinpoint which people are more likely to have gluten and digestion problems along with their autism and which will not. This won't matter for an adult who is now in his 40s, but it might matter for his children or grandchildren, or even for more distant relatives who are part of the same gene pool. We just don't know yet.

 

On the other hand, worrying about precisely where someone falls on the spectrum is to some extent a futile exercise, with knowledge of the brain where it is right now. As Michele says, there is so much overlap among and between symptoms and syndromes. Sometimes it all just seems so tangled that it will never be possible to understand it all.

Thanks for your insights. I agree that it's better that he has a diagnosis somewhere on the spectrum now.

 

Your second point probably applies as well, although he was not diagnosed as a child. He's had forty years of people working closely with him to get him to the point where he is now. He hasn't "outgrown" the problems, but forty years of work eventually has some pay-off. Some of the things people have worked hard to teach him have become habits.

 

Maybe the diagnosis of Asperger's now will help his mom continue expecting more from him. While autism might get him more services, I wonder if the Asperger's diagnosis gets him more "respect". Maybe people will have for him higher expectations that are still reasonable within the autism spectrum.

 

Maybe the doctor thought that Asperger's applies to where he is NOW, even if autism would have applied to him years ago IF the criteria for autism had been back then what they are today. I still wonder why it took so long for him to get a diagnosis on the autism spectrum, (he's seen psychologists for years,) but at least I'm glad that someone (besides me and my husband) now recognize that he is.

 

Does anyone know about any good sibling support websites for grown-up brothers and sisters of grown-ups with autism spectrum disorders? My BIL's issues have taken most of his parents attention and parenting skills for my husband's whole life. BIL got tons of time and attention and money and help, while my husband was pretty much left to fend for himself. I don't know if dh wants this help, but it might be helpful for me.

Link to comment
Share on other sites

First, I want to say that it is comforting to know that there are others out there dealing with adult relatives on the spectrum. I have looked for support groups but didn't find any when I last looked. Most groups are dominated with parents of children on the spectrum. I would love to have support and to hear how other families cope and prepare for the future.

Thank you for posting your brother's experience. The bolded part is the stage we are in right now. Getting him evaluated and diagnosed by the "state" will open lots of opportunities for him to function more independently. For exammple, there is a busing service in our county that he will be able to use for $6 one way to be picked up and dropped off at any location within the county. That will really help with employment b/c at this pt we do not want him driving, etc.

Unfortunately my brother is driving. When he was 16 a professional advised my parents to let him get his license. The reasoning was that by providing him with those 'normal' activities it would encourage him and give him the desire to mature and 'be normal'. My how times have changed...

The diagnosis has also opened doors to things like food stamps and medicaid which have reduced the burden to our family in a huge way - plus given my brother a sense of independence.

The state eval is important, but we found that with the private eval many doors still opened for my brother. For one, he was able to receive services thru our state rehabilitation services with the private diagnosis. I can't tell as I respond what state you are in but this link will show you what he qualified for http://www.arsinfo.org/default.aspx?id=29 . My guess is that your state has something similar. Using, or attempting to use the state rehab services was critical in my brother receiving disability since they had documented that despite career training and assistance they could not help him maintain a job.

 

I wish a diagnosis had helped our ds accept himself. It hasn't. He doesn't want to change and he is just plain angry that he isn't like everyone else. A large part of it can just be the fact that he is 18 and wants to emulate his older brother's life and can't, and yet, he sees his younger siblings getting ready to.

 

The teen years were tough for my brother. College life in a dorm was a disaster. He did complete some classes and such but it was so very difficult for him. Now that he is nearly 40, there is some accpetance of himself. He was tired and ready to accept his differences so that may have helped.

You ds is fortunate to have you in his life. I have another friend with an adult brother on the spectrum. He turned to drugs in his early 20s trying to cope and his life has been a nightmare ever since.

OP, best wishes in your being a positive influence in your bil's life. It may have lots of bumps along the way and it may be under appreciated at times, but it will be worth it.

 

Thank you so much!!!! :grouphug: Thanks to everyone!!!!

 

 

BIL lives is his own apartment, but not "independent" in the sense that most people think of as independent. He has a low level job that is not enough to support him. It took years before he was able to find a job that he could keep, and that only happened with FIL helping out a lot with communicating with his employer. FIL and MIL did/do various other things like mentioned above, including a trust fund and they are the ones who saught counseling. FIL passed away earlier this year. At this point, MIL is in good health, but she's getting older.

My brother lives in a garage apartment on my parent's property. It isn't attached to their house so he feels like he is more on his own. At one time they bought a condo for him but that was a bad experience. He just couldn't navigate all the social situations and manage his money. They have kept the condo for him in the future though since it is near public transportation. ONce he can't drive or they can't help him he will move back into the condo and I will be the person responsible.

 

 

Maybe the doctor thought that Asperger's applies to where he is NOW, even if autism would have applied to him years ago IF the criteria for autism had been back then what they are today. I still wonder why it took so long for him to get a diagnosis on the autism spectrum, (he's seen psychologists for years,) but at least I'm glad that someone (besides me and my husband) now recognize that he is.

 

We seriously began pursuing a real diagnosis for my brother in 2004. My dad was retiring and closing the family business. That business had been th only job my brother had ever been able to maintain - and even then just barely. My dad had been trying to find a friend or some other business to hire my brother but each time it ended in a bad way. It took a long time for us to even find a psychologist or a psychiatrist who would consider evaluating him to find a new, more accurate diagnosis. Because I had been working in special ed for over 10 years at that point I recognized the characteristics and kept pushing. Besides, the previous diagnosis of nonspecific learning disability didn't help us at all.

There is so much focus on young children on the spectrum that I honestly think many professionals forget that this is not a new issue. There have been people on the spectrum for generations. They have just gone undiagnosed for the most part unless they were more profound or more vocal, like Temple Grandin. Also, for people like my brother, they have IQ and acbility that is confusing. He looks ok, seems ok, but just 'couldn't get it together'. I know there are many more like him so I actually hope that more adults will be properly diagnosed and be given access to treatment and assistance in the future.

 

 

Does anyone know about any good sibling support websites for grown-up brothers and sisters of grown-ups with autism spectrum disorders? My BIL's issues have taken most of his parents attention and parenting skills for my husband's whole life. BIL got tons of time and attention and money and help, while my husband was pretty much left to fend for himself. I don't know if dh wants this help, but it

Link to comment
Share on other sites

First, I want to say that it is comforting to know that there are others out there dealing with adult relatives on the spectrum. I have looked for support groups but didn't find any when I last looked. Most groups are dominated with parents of children on the spectrum. I would love to have support and to hear how other families cope and prepare for the future.

 

My brother lives in a garage apartment on my parent's property. It isn't attached to their house so he feels like he is more on his own. At one time they bought a condo for him but that was a bad experience. He just couldn't navigate all the social situations and manage his money. They have kept the condo for him in the future though since it is near public transportation. ONce he can't drive or they can't help him he will move back into the condo and I will be the person responsible.

Yes, it is comforting to read your posts and know that there are other people going through this. Thank you again for sharing.

 

I did a little searching for information about siblings of people with autism, and the little that there was about this all seemed to talk about children. I had hoped you or someone else would know of something that I missed. It does seem that most of the information about autism spectrum disorders deals with children, but people have been dealing with these things for generations without knowing exactly what they were dealing with. They just knew who they were dealing with--my husband's family used to say BIL was just Bill. (but they used his real name.)

 

I see some patterns we have in common. I have experience with special ed too, due to my son's dylexia and I noticed the similarities between BIL's behaviors and autism spectrum disorder. In both your brother's and my BIL's life, changes of circumstance of their parents prompted a better diagnosis. It makes me a little more confident in the doctors my BILs sees to read that the professionals your brother saw didn't come up with autism/Asperger's right away either.

 

Thanks again. It helps to know that we're not the only people dealing with this too.

Edited by merry gardens
TMI
Link to comment
Share on other sites

Merry,

 

I read your post earlier and I just wanted to share my own personal experience as a parent in hopes that it might shed some insight on how difficult this is on a family.

 

Our Aspie is truly a money-sucker. I don't mean that in a derogatory way but in a realistic way. We have spent thousands and thousands of dollars in our attempts to help him. The money spent is completely out of kilter with what we have been able to do (or will ever be able to do) for our other kids. He consumes more of our time, energy, and resourcees. Constantly. I have often said that if I only had 1 child, him, my life would be just as busy as with all 8.

 

Do I like it that way? Heck no. Do I want it this way? No. But, it is what it is. Our other kids all recognize his disability and there is no way any of them would want to walk in his shoes for 1 day, so we use that as a way to help them realize that they shouldn't begrudge the inequity that exists. We have stumbled through his life trying to find ways to help him and unfortunately wasted more $$ in failed paths than helpful ones, but there was no way of knowing the negative outcome w/o trying. Ds will probably never move out and will probably never be able to provide for himself. Our wills are written leaving him a disproportionate amt of $$. We feel that how we allocate our resources has to be fair to their needs, not equal.

 

All of our other kids (well, I am making assumptions about the youngest 2, but they seem beautifully normal :) )truly have the ability to make their lives what they make them. He lacks that ability. His life is limited and yet, he yearns for the ability to make it what everyone else seems to have so easily. I'm sure he would gladly reject our time and assistance if he could form relationships with other people that he wants so desperately, if he could drive/date/cope like he sees his siblings do every day.

 

It is truly summed in oversimplification of "life isn't fair." Nope, it isn't and sometimes that just all there is to it. We have to make the best decisions that we can and that doesn't necessarily mean they are ultimately the right ones......just the ones that seem like the best when looking forward, not when looking back and then again, sometimes parenting just plain stinks b/c none of the choices seem very optimal and no one is going to be happy with any of them.

 

:grouphug: I hope you find answers.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...