Parent of Adult Child with Asperger's Syndrome

[deleted account] ( 249 moms have responded )

I'm hoping to find other mom's (or dad's) of adults with Asperger's Syndrome. My son was diagnosed after age 20 but I've known he was an Aspie from birth - just didn't have the terminology until a proper diagnosis. I would love to share experiences, frustrations, joys, set-backs and the perspective of other parents of adults. Since AS was only diagnosed in the late 90's, there was no resource for us while raising our Aspie's and I'm looking to network.

MOST HELPFUL POSTS

Jane - posted on 04/07/2013

3

0

0

I have an aspergers son who just turned 21.
Why am I in the bathroom crying and typing to strangers?
My once sweet child has turned into a horrible monster. The whole house walks on eggshells afraid of saying something that will set the hulk in motion. This has been 5 years of absolute hell.
I am ashamed to say that I don't like my son.
Today was another screamfest with accusations and threats which started over nothing and I want to move out of my own house.
I know that I am not alone in this as I have a good friend with another monster son but there are some days when I can't take it.
I would be so grateful for suggestions or a cure

Christine - posted on 07/17/2013

3

0

0

Hi I just joined this discussion. I recognize all your issues - because I feel exactly the same way. I also have a daughter, 30, who was diagnosed with Aspergers 2 years ago - but we've known all her life that she was "different." Brilliant, odd, dresses a bit strangely, trouble making friends, intriguing, clever, wooden with strangers, etc etc...a person of extreme contrasts. How could one girl be so smart but have trouble washing her hair or brushing her teeth? how could she do well in graduate school but not remember to sign up for her final licensing exam? how could she have an advanced professional degree but then be unable to get a job because she couldn't make eye contact in an interview, then be working for minimum wage and even lose that job? How could she get straight A's in college but be incapable of paying bills on time or holding down a job in real life? Of course when she was growing up there was no such thing as an Aspie diagnosis. She was called "gifted" but was treated as "weird" by most people. A beautiful little girl, I remember her having a photographic memory, extreme hobbies (like being able to recite every word of the "Get Smart" TV show), a love of travel, a perfect singing voice, an uncanny sense of direction and almost no friends. I remember feeling so confused. Why wasn't she turning out like our other kids? Why didn't her intelligence and academic achievement translate into more success in the real world?
Now at 30, she has had many academic successes - but so many personal and professional failures. I think about age 18 was her high point. It's been downhill from there. I think she is becoming more disabled as she gets older. Has anyone else seen that?
The hardest part when they are an adult is the sadness you feel when you see the life you imagined for them (or they imagined for themselves) compared with their real life.
I see her life passing her by. She lives in a one-room apartment in another state with a roommate and several cats. She is unemployed and having no luck finding a job, and her unemployment is about to run out. Their apartment is so dirty, I was horrified to see it. She seems not to even notice the dirt and grime. Her teeth are getting bad because she won't brush or go to the dentist.
As many parents of Aspie adults, I also am very worried about her finances. She completely lacks common sense to deal with day to day issues. I do not want to be in the position of having to support her the rest of her life. I (and she) don't think her moving back home is a good idea and I am dreading the possibility. She does have this one good friend in her roommate -- and even one friend, as any parent of an Aspie knows, is a rare commodity. Any suggestions appreciated. Maybe there are no solutions. Just reading this board made me not feel so alone.

Whitney - posted on 02/18/2014

4

0

0

Hello mommies. I hope this is ok that I post something here. I really would like to share insight on all the experiences you have regarding this condition. I am an older sister (28) of an Aspie brother (25) that was diagnosed back in the early 90's (I want to say he was 6). He has completed HS, has maintained a part-time job that a state funded program actually helped him get back in 2008 and just earned is driver's license last year (after a long process of preparing. The anxiety definitely got in his way for getting it sooner). He is still living at home and being supported by my parents, which is what I have been struggling with for years now.
Being the older sibling, I already felt the responsibility to care for him. I was taught that he was different, but I was never taught in detail about his diagnosis. I was always just told that he's just different & we all just need to understand that his behaviors are just the way he is. Not sure if I can blame my parents for that. I know that when he was diagnosed, there was very little knowledge about Asperger’s.
Now I am struggling with the acceptance of how truly debilitating his condition is and I feel there is a growing resentment I have towards my parents (for not continuing to parent him. Even after HS, there was plenty of help he needed but I felt they just thought their jobs as far as educating him done and for enabling him to not continue becoming an independent adult) and towards my sibling (because I feel he is taking advantage of my parents and manipulating them).
He is very functional, but like many Aspies, he struggles with empathy and social situations. He has very inconsistent filter and manners are not always there. But he balances his own checkbook, bathes, dresses and feeds himself (so long as my mother does his laundry & keeps groceries/supplies stocked). My parents even supply him with alcohol and specialty foods he likes and alcohol is probably the last thing someone with a neuro disease needs. He is allowed to be in his room all evening, until dinner is ready, come down, eat & drink everything, then retreat back up to his room when he feels like it. Sure he’ll help my parents with various chores around the home, especially the heavy lifting, but only when he’s asked and they don’t try to keep him engaged to become a more independent person, which I know would help with his self-esteem and happiness. The state does not recognize him as being disable so he doesn’t qualify for SSI, which should help my parents realize he can handle more responsibility. My parents did not even think to research what benefits he would be eligible for until 2-3 years ago, like mentoring programs, food stamps… If I had a child with this condition (which I am aware could very well happen with my genealogy), I would think I would have been looking into what options my child would have as an adult even when they are still a young child. I would think, even more so for a child with a disability, you would have to always be thinking a couple steps a head so that you can try to give your child the best chances for success. Why didn’t they do this?
I recent conflict arose when I finally sought out some help for some focus and anxiety problems I was experiencing. I was tested and come to find out, I was positive for ADD. I am very into eastern medicine and do not like to take pharmaceuticals, but my naturopath encouraged me to understand that this is something that I need to help with this condition. She also stated that I could have very well been struggling with it since adolescences but perhaps because of my brother being the child with the bigger issues, mine were overlooked. I revealed this diagnosis and information to my parents only to receive eye rolls and looks of skepticism.
I seriously don’t know what would happen to my brother if my parents were to die tomorrow. He would not be able to maintain their home or afford to keep the lights on, which brings me to my next issues. Because he is so functional and has proved to be employable, I don’t know why he doesn’t get a second job. My parents enable him to live the way he does which he would never be able to do without them. He saves his money to buy video games and comic books, not to pay bills and buy groceries like adults have to do.
Bottom line, my sibling is going to fall onto my lap when my parents die and I am going to have this privileged man-child that is going to be getting the loudest wake up call of his life because I won’t tolerate it. And to think my parents could have prevented it by helping he continually learn and grow. I know he can do better. I know he can do more. I know he would love himself so much more if could just get the encouragement and parental guidance he needs. He was so proud of himself for getting his license, you could tell he felt that he could accomplish anything now. But soon after, the flame of inspiration died and things went back to the way they have always been and I feel it has a lot to do with my parents not continuing the challenge him. They’ve accepted that they have a child with a disability, but only part of it. Not sure where else to go from here other than to leave the 3 of them to their demented, dysfunctional ways and hope that maybe they will figure it out one day. Until then, I think I need to walk away.

Lisa - posted on 07/18/2013

3

0

1

My son will be 28 in October. He was dx in the mid 1990's . He attended a special school for autistic children until age 12 when he mainstreamed into a regular public school. He was not able to complete any college but did complete HS.
He is currently unemployed but not living at home. He has a roommate.
He wants to be a filmmaker along with 30000 other people who have a film degree or someone in the business. He is talented but....

My biggest issue is that he will not acknowledge his diagnosis and therefore will not take advantage of any assistance available to him. He should be getting SSI because he is unable to keep a job. He should be using VESID to help him find a job. He believes he can be choosey in terms of what type of job he should have. He will not flip burgers or push a broom. I cannot continue to support him financially. I am lost. My husband does not have any tolerance for my son and reacts to him as if he is deliberately doing things to upset him. My marriage is suffering.
Thanks for listening.

Patricia Grahame - posted on 05/18/2013

4

0

1

After years of my own research, and after having read so,so,many books and articles on Aspergers, this is the first place I have read things that I find very,very HELPFUL !I can ,(finally !), IDENTIFY with Aspie moms ! You have no idea, well maybe you do, how relieved I am !
I was starting to think of myself as : stupid,unloving,lacking patience,unintelligent, (how can I not know how to relate to my own daughter ! ?),lonely,alienated, forgotten. I am a retired psychologist, having had a private practice for over 30 years,and have excellent relational and communication skills...but not with my daughter! I am a single parent of a 46 yr.old gorgeous, now married, Aspie daughter, classified in middle school, with what was then known as, Learning Disabilities.No one was diagnosing Aspergers back then in the mid eighties. Now,our relationship is almost completely eroded, we have short, strained conversations, very infrequently. I live 35 minutes away from her, and I have never been to her apt.on the Upper East side of Manhattan. I have not seen her in over year. She has huge rage isuues, and, there was a time, she could become violent. She scared and angered me.I was at a total loss.I have long needed some sort of "guide," for communications with her. I need to learn how to "relate," to my daughter. I do not want to lose her. I love her more than anything in this world. I have been suffering from depression for many years now, as I have not been able to heal or resolve this situation. But some things I have read here, make me feel so less alone and give me...hope. Hope at last !Any and all suggestions welcomed ! Thank you all for ...being there !

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

249 Comments

View replies by

Kimberly - posted 6 days ago

1

0

0

I too have a 23 year old aspie. She works 11 hours a week and is stressed out because of it. She went to and quit 3 colleges and now has racked up $23000 in student loans and won't take care of them. Not even just to have the payments reduced to where she can pay them at least a little. She won't apply for SSI, Food stamps or any other assistance. We are heart broken but have to place her in a low income housing, which she is giving us a hard time about. I mean REALLY HARD time! She does better when she sees her therapist, but often skips appts. We are so worried about what will happen to her if something happens to us. She can not survive on her income. She was not diagnosed until the age of 19. Making things even harder. She like many others seems to really resent me. The situation is very heart wrenching. Made worse by people not understanding Asperger's. 211.org has a lot of helpful info if you have time to look into it. I too was extremely guilty about not having her diagnosed earlier, but I didn't know anything about Asperger's then. Glad I found this site.

Lisanne - posted on 01/18/2015

1

0

0

I have a son, who has high functioning aspergers, along with severe OCD. He is 23, and. there are times when it's just as frustrating as it was when he was little...I don't know if he will ever be able to live on his own. He is so smart, and so wonderful...and so high need...

Barbara - posted on 01/11/2015

12

0

0

My daughter is 32 and was diagnosed 2 yeas ago. Even tho she had it long ago it was never an issue until she got older. Other things I think sat it off in an abrupt form and it's went down hill from then. Please feel free to discuss anything you want with me. I'm looking for understanding and help in anyway to accomplish it. My brain just doesn't get it. And the pain of the way she treats me is only making it worse to understand. So feel free.Thanks and have a good day

Barbara - posted on 01/11/2015

12

0

0

My daughter has many traits as indicated in previous posts. However, Asperger isn't on a social disorder. There are multiple traits that Aspies have that range from social to pure defiance over anything and everything. So, so many symptoms that come a long with it, or as a repercussion of it.

Barbara - posted on 01/09/2015

12

0

0

I wish my daughter could have been diagnosed at a younger age. I think it would have made life much easier. At this age she's set in a way of what she thinks things are and weren't. She believes things there are no situations involving but yet she's put them there. She is just hell bent on believing what she believes and nothing you or anyone else can say will make her see it a different way. She has become this master schemer who makes up stories so she's a victim and gets all the attention and pity for things that aren't so. I just sit and shake my head constantly when I think about it all. It's so over whelming and depressing. I think a lot of children are misdiagnosed with things.

Deborah - posted on 01/08/2015

3

0

0

My son will be 26 next week , he wasn't dx until he was almost 18. Years ago this was missed by everyone. He was dx as ADHD , like many were back then. I didn't know Aspergers was.

Deborah - posted on 01/08/2015

3

0

0

What traits does she have ? Aspergers is social, they can't look at someone's eye and talk. Appear to be shy at 1st when around new people.

Barbara - posted on 12/21/2014

12

0

0

From what I've read and know, it seems to me like the traits are definitely that of Aspies.
The list goes on and on as to their actions and it appears to me that most of the actions my daughter has is the same traits of others with aspergers. My daughter is 32 and does admit it and openly talks about it especially to her friends, fiance and others but to me, well not to much and when she does, it's not so nice. Some of her traits are

can't be around people, agoraphobic (ignore misspelled words please)
very technical, you say it, you better say it right!! ex: tell her to do the dishes, that's exactly what she does, bowls and plates because silver wear isn't dishes, nor is cups etc, they are glasses, or mugs or coffee cups, tea cups etc.
she needs to be told what to do, ex: do your laundry, make your bede etc, etc...if you don't tell her, she doesn't think to do it. Will walk right owver something and not pick it up until you say something, and I've purposely left things for over a week to see and then said why didn't you pick that up, you just stepped over it for a week and she said my brain doesn't tell me to that just because it's there.
changes are a big no, no! nothing can change, she puts it somewhere you better leave it there or there is pure hell to pay.
sloppy,doesn't care, is so lazy.(wasn't raised that way)
I'm the enemy i guess you can say, well according to her.
She follows directions but the problem is, you have to tell her everything every day. Like nothing sticks in mind.
Genius level smart and has to correct me every chance she gets and or anyone else as well.
Anything she remembers is her way and because that's what she remembers and how she remembers it, so she's right, I'm ALWAYS wrong.
addiction problems
anxiety attacks
on and on....aspergers is a wicked thing on the mind. The problem is the wickedness doesn't stop there, it affects everyone and I'm noticing that it's more so the mother who is attacked more than men or others? I wonder if there is something with that or is it just me reading into that?
By the way my daughter was diagnosed a year 1/2 ago, and i was blamed by her therapist while in rehab that I should have notice this, she was reading encylopedias at 3 years of age, so because I just thought she was smart, ( i always worked with her on educational things) but because I didnt notice this was aspergers it was my fault for not having her treated before. Mental health wasn't even considered let alone recognized as a medical problem until the late 80's or early 90's but it was my fault in the early 80's? I took her to therapy when she was 9, 10 and again at 13 and they couldn't see her after about 3 visits because she reversed the roles and was getting them to talk instead of her. She flat told them i'm not playing your games! many times I tried, *SIGH*
ok enough said, believe me traits don't end here. money doesn't care whose it is, her's mine or her dads she'll use it if she wants something! and yes without our knowledge until we get a bank statement 700.00 short!!! yes, and sometimes more. total shopaholic. sigh again...good night my brain is on high gear and I need sleep. Blessings and luck to you.

Barbara - posted on 12/21/2014

12

0

0

I have found many things on this site helpful as well. The one thing I've realized as well is I am not a lone. We are not a lone and thank god for that. I've just started researching about Asperger's because I'm at a loss. Completely cut through the soul and heart. I sit and start crying, I go to the store and something clicks in my mind and I start crying. I feel hopeless most days. I want that hug I used to get, the feeling of feeling like I'm worth something. Instead it's quite the opposite. My daughter is 32. She has no emotion to me in any way. If I'm around i'm there but with a distance that never used to be there. I get talked to rarely and walked around like a piece of unwanted furniture. I'm writing now through tears trying to understand what I did. Everything to her is wrong when it comes to me.We try to have a conversation or she will ask me something and suddenly i open my mouth and before I can get a word out she is going off like a roaring blaze. As I'm being told how horribly stupid I am and other choice words and ranting on and on. I'm still trying to figure out where this whole thing went wrong, what did i say to get all this. I'm sitting in a land of fog with no answers. I just get my purse and leave.I'm lost, just do not know. I've ask a friend of mine who is a therapist and knows my daughter and her rages. She told me to ask her a few questions and try to put her in charge of the conversations. Instead of my suggestions or answers, swing it back her way. I'm trying to prepare myself to find the time and way to be able to, or should i say for her to "allow" me to talk to her on a level basis with true feelings no sugar coating or saying something that she wants to hear because I'm so afraid she will go off. It's a very delicate thing to do and I really do not have the way to do it or the best idea how to even approach the possibility of her being willing to have a talk. My friend told me the best way she can think of is to say something like I'm trying to to learn what aspergers is about and if you (she) has any idea as to where the best place is to help me with that? The other question she told me might be good is asking her, What is it I can do to make things easier for her? She told me they feel a need to be in charge of everything they encounter, therefore, put everything in her control and you really aren't saying much and she's doing the talking or hopefully will and it sorta takes the burden off me. I want to do this, but now that the holidays are here, I want to wait until after that. If you or anyone else has suggestions as to other questions or how to word certain things, or just plain suggestions in anything, I'm willing to take all advice. Has anyone else been told to try to handle your Aspie this way? I do realize my daughter does have a need to be in charge and acknowledged in everything she says and will not stop until she's comfortable that you agree with her and nothing you says matter. She just wants to hear an OK! Her words to me about a month ago!!!!!!!!!
Sorry this is so long but it feels good to put it somewhere and release it from my mind.
Barb

Barbara - posted on 12/20/2014

12

0

0

Thanks so much for commenting. If you don't mind, can I ask you some questions or advice?
You said in your blog that "outbreaks are not necessarily a symptom of aspergers, but rather a response to increased anxiety and stress as it builds up and they don't know how to deal with it. make sure you are really listening to your child" etc. Okay, I do understand this however my first question is (1) , Does this mean that outbreaks can be controlled if she wants to? 2. When these outbreaks happen does it appear to be directed more to one person than any other? I mean my daughter will lash at me over no reason but yet her finace' can do something and she totally walks from it? Why is the anger directed to me 99.9% of the time?
I'm not throwing a pity party here, but I just can't understand her anger to me with her build ups of spells.

You seem to handle and recognize your Asperger's and have a handle on it. How did you accomplish that? Did you go to therapy? How old were you when it was diagnosed? I'm full of questions and thoughts are so jumbled in my mind. This last 2 years especially have been pure hell on me and I'm turning in circles trying to understand it all and more so trying to deal with it.
I appreciate your input so much.
As for your friend, I pray she can find the best help for her without being depressed in what her parents are doing. Do they not have houses or homes that help with this kind of thing with living assistance help?

K - posted on 12/20/2014

1

0

0

Helpful to read. I am the mother of a 29 year old, not diagnosed. But I have to admit that she likely is " on the spectrum". Her rage with me and alienation of family members has been very difficult. I don't begin to know how to communicate with her. She would not admit that Asperger's is a possibility, I am sure. She blames me for her different ness.

Pamel - posted on 12/16/2014

1

0

0

My son is almost 19. He's never been formally diagnosed but I have been told by his Doctor that he is aspergers boy. He has a difficult time with personal hygiene especially teeth brushing. He has extreme anger issues. Everything becomes a huge argument or even a fight. He told me last night that he can't wait to move out so he would never have to see me again. I've tried, tried, tried to make him aware and responsible for the small things. He does have a job and he is a History major in college, he is never late for classes or work, but always seems to be late with his phone bill and argues when it's time to pay his car insurance. So all he pays for is Car ins. phone, and gas for his car. I don't think that is a bad start at making him responsible. He piles dirty laundry in his room til it smells like his room it rotting. I try to make him go with me to the basement and make him put his own laundry in the maching to wash them.
Everyday when I get home from work there is another thing he wants to argues about... I mean FIGHT about. Simple things like take the garbage out becomes a war in my house. But I have told him that he needs to contribute to the running of the house even if it is as small as garbage. I'm at a loss of what to do to help my boy/man. He has one friend, he seems to be a good friend. He has yet to be in trouble with the law but I'm afraid that will come.

Jill - posted on 12/08/2014

1

0

0

Dear Lisa,

It has been months since you first posted. I hope you received encouraging words from others. My husband and I have a private pact that our son will not be allowed to move back in with us. He is employed and being 2 years out of college he still lives in an inexpensive apartment. I am working on letting go of any sort of expectation I have for our son. He is social and respectful with us and comes to visit 2ce a year. He tries to keep his mess in just one corner of the house while he is here. Right now I am listening to all these mom's and hope it will help to be connected to everyone.

Jill

Julie - posted on 11/30/2014

10

0

2

i meant unfit to plea in a court to help him with being charged with burglery as he thought he was helping someone get thier stuff from work and not stealing I know he is not mentally challenged he is high functioning and presents well and this is why the courts would have difficulty recognising he has a problem with being literal

No - posted on 11/23/2014

1

0

0

My sibling has Asperger's, and was diagnosed about ten years ago. He's becoming increasingly more and more violent to the point where I think he's going to kill someone. He just twisted my ankle to the point of spraining it probably and I honestly don't know what to do. I want him in an institution where he can get professional help.

Barbara - posted on 11/14/2014

12

0

0

I understand your frustrations Suzie. Some days my daughter is the sweetest talkative person in the world then it seems like instantly a switch to something a lot less desirable to be around. I'm definitely in wave link and understanding exactly what you are saying and how you feel. This diagnosis of my daughter is fairly recent, although we knew something was there, It was first diagnosed as panic attacks, which she was having but that was I guess the flip side or as I call it, it's side kick to other issues such Autism. It does and will continue to put a very different light on our life and I am enjoying reading other post. It has given me a sense of relief to some extent just in the basic hours after signing up today. Thanks so much for your encouragement and helping me feel comfortable here.

Suzie - posted on 11/14/2014

7

0

0

I think part of the problem is that people refer to AS as 'mild autism' - as if it is just a weakened version on a general level. What I have found is that some days he is as communicative as the next person or more so and I doubt that he has AS at all, then wham! he's like a person enclosed in his own little world and at odds with everyone outside it. It's then that I can't seem to do or say anything right, so I keep my peace - and he wonders what's wrong with me! Can't seem to win here - but it is nice to be able to talk to others who do understand. I feel as if I am at least on someone else's wavelength.

Suzie - posted on 11/14/2014

7

0

0

Hi, my son was 17 when he was diagnosed and that was 20 years ago. We were told during developmental tests that he would 'grow out of it' whatever 'it' was. When we realised that this was not the case I was informed by my GP that I was a 'neurotic mother'. I insisted that his father attend the GP (she took more notice of him) and she referred him to a consultant for 'depression'. Fortunately, the consultant was fully aware of AS so our son got a positive diagnosis. I have since changed my GP by the way.

Suzie - posted on 11/14/2014

7

0

0

Yes, my son has been apprehended by police on several occasions. He was told that he 'looked suspicious!' He was reluctant at first, but now he carries a card with him that confirms that he has AS and gives a brief description of the communication problems he has, especially when he is anxious - which, under these conditions, he would be. Hope this helps - it helps him as he now feels as if he has 'back-up' just in case, and you can always put a contact telephone number on it for extra reassurance.

Barbara - posted on 11/14/2014

12

0

0

Oh yes, I get the same thing! I really feel like 90% of the time my breath is wasted air because in the end, nothing is done the way I do/did it, nor is anything said the way I hear it and for gods sake nothing is remembered the way I remember it lol. Geesh, no wins here lately! Not giving up tho

Julie - posted on 11/14/2014

10

0

2

Yes its seems like they talk talk talk or wont speak to you at all my son thinks i nag nag nag or try to control him when he doesnt want to hear what we say. Patience of a saint is required at these times!!

Barbara - posted on 11/14/2014

12

0

0

I experience this with my daughter on a constant basis with my 32 yo. daughter. I really do not have much advice as i'm totally lost in pain from a split tongue and horrible words. Something keeps going back through my head that my daughter recently told me while we were having "talk" ? about how do i begin and where do I start to understand her. Her words to me were. Acknowledge me! When i say something and you say something back, the conversation keeps going and it keeps going and eventually turns into a "misunderstanding" or an argument. She proceeded to tell me that all she needs to hear is OK when she states something. Just something to let her know the conversation is ended or she will keep going until she gets ! It's difficult how we as adults have to change our whole communication skills, how we speak, tones we might use or hand gestures. I hope this helps. I'm on my journey to reading more. I'm new to this and desperately trying to understand and learn life with my daughter again.

Julie - posted on 11/06/2014

10

0

2

imagine this my son was asked late at night to help someone hed only just met to get thier stuff from work in a builders yard when surprise surprise he police arrived and the person ran off my son just stood there was arrested trying to convince the police he was aspergers a nightmare as he presents well we are now in process of unfit to plea anyone else had this problem!!!

Anonymous - posted on 11/04/2014

1

0

0

Hi there, I'm not a mom, but I have aspergers. I just wanted to add something to this discussion.

my friend and I both have aspergers, though she has it more intense than I do. What I wanted to add here is a reminder that your child isn't necessarily mentally challenged or incapable of surviving on their own. now, I'm not saying that for some, intense support may be very helpful, but not everyone is the same.please remember that your child is an individual and is capable of personal thought.

my friend lives in a household in which she is seen as mentally challenged and incapable of doing anything. she is almost 18 and her parents are seeking adult custody of her. I've known her for a long time, and I know that she's a smart person. she could handle herself on her own if she had to.

she is incredibly depressed due to the abusive environment of her home and the fact that her parents don't listen to her, subsequently, being forced to live with them for the rest of her life would be extremely damaging.

what I'm trying to get across is, listen to your child. aspergers doesn't make them stupid and incapable. make sure if you're going to be looking after them in adulthood, you offer them the chance of independence if they ask for it. let them live for themselves.

angry outbreaks are not necessarily a symptom of aspergers, but rather a response to increased anxiety and stress as it builds up and they don't know how to deal with it. make sure you are really listening to your child, rather than jumping to conclusions and assuming they've become psychotic. I understand that it's stressful for you as parents as well, but you need to remember that your child's aspergers and anxiety are not about you. if you can't handle it alone, therapy is always a benefit. but overall, just listening to your child and considering them as an individual just like everyone else is the most important thing you can do.

Suzie - posted on 11/01/2014

7

0

0

I know the feeling! My son can talk to me as if he wants my advice and when I make suggestions, he shoots them down in flames. Afterwards I think 'why did I bother?' but at the time I suppose I just reacted as any parent would. If I'm feeling fine, it doesn't seem to bother me as much but if things haven't been going great (for whatever reason) I feel myself spiralling. You are right with 'there are so many things to discuss', I think the best thing to do is to address each one as and when they arise. I'm going to try and remember, next time it appears he wants answers, I'll ask him what does he want to do about it, or does he want me to come up with an answer - that way I'm covering myself. I do feel my son gets the need to assert himself at times but it just seems to go a bit over the top. Does anyone else experience this?

Julie - posted on 10/31/2014

10

0

2

I have read all the comments people have written and it so links up with my situation each person has some comment that we as a family live with everyday as we speak we have had yet another row over finances and his pa has taken him out to explain it to him as he wont hear it off us Thanks for reply I have a million things i could discuss where to start!!!

Suzie - posted on 10/30/2014

7

0

0

Hi Julie

I am in England, a single parent , my son has AS (and other related issues), he lives with me, he is 37 and was diagnosed at 17. I am not a lonely person but there are times when I do feel so 'alone' because I know that my friends and family simply do not understand how I feel at times. I find that initially, people are interested in his condition, then they just seem to melt into the air. They tell me how great it is that I cope so well - but there's little choice, you cope because you have to. My son is an intelligent man who works for a living and I am proud of his achievements but there are times when I could honestly lock myself in a sound-proof room and scream. I'm sure you know the feeling!

Julie - posted on 10/30/2014

10

0

2

I ALSO HAVE BEEN LOOKING FOR OTHER FAMILIES MY SON WAS DIAGNOSED WITH SCHTOPHENZIA AT 19 9 YEARS ON HE HAS FINALLY HAD DIAGNOSIS OF ASPERGERS WHICH WE HAVE ALWAYS SUSPECTED LONG STORY I AM IN ENGLAND WOULD LOVE CONTACT WITH OTHERS TO SHARE STORIES

Judyd - posted on 10/26/2014

2

0

0

Neurofeedback therapy can help. My husband has had it and he is now able at times to be empathetic with me. My two sons would not consider this as they do not believe they have anything wrong. We spent thousands of dollars on therapy for them and hundreds of gallons of gas and ditto hours of time for over 15 years just for the fun of it!
Judy

Wendy - posted on 10/19/2014

8

0

0

Here is an update that might interest Mums of adolescents or young adults with Aspergers. Our family is embarking on a new journey for our sons future, self confidence and better independence in the community. We are going to up skill the training of his Working Line German Shepherd to become his Service/Assistance dog.
Yes you can now do this, but it takes a lot of time, commitment and understanding of the dog. And there are only a couple of groups that will work with families to encourage hem to do this for themselves with the groups support. We are still in the initial stages of putting all the paperwork together at the moment, medical and vet reports etc. but once this is done we can formally apply and hope to be accepted to have pur dog assessed for suitability. We have already done most basic training but to embark on this team effort you need to commit to be able to attempt to pass the public access test successfully at the end of training. I suspect we will have a few teething problems with educating the community and businesses as to the service dogs rights being the same as the person with a disability who is the dogs handler, or alternative handler perhaps a family member. The Handler works towards being licensed as the dog works towards being certified to work in public.
Taking this step is not for everyone as the person with the disability has to be fully committed to the program (with family support of course)
Would love to see any shared posts from people who have already taken this step successfully.

Wendy - posted on 10/19/2014

1

0

0

Hi Pamela,

When I found this site, tonight, after searching for a site for years (tonight I googled: help my adult son who has asperger's) and read your posting, I was overwhelmed with emotion.

It has been 8.5 years since my angry AS 25 year old son has communicated with me. I gave him all I had and yet when he turned 13, he let out his own horrible frustrations at me-terrorizing me. I also keep the door open and text/email sometimes. I do go on with my life and try to move beyond this but it is nearly impossible as a parent. Would love to share more, later.

Did you move to NZ?

Elizabeth - posted on 10/17/2014

2

0

0

Hi I am new to this group. Have a 20 yo daughter undergoing eval.... Long process - looks like it will be ASD - high functioning but what does really mean? Some of her deficits are grade school level- problem solving is the hardest thing- but her creative photography talents are amazing. She has a job in a mall clothing store but was called into the office last week and lectured by her manager because co-workers think she is cold and "short" with them. Her version is that she is always doing some task and they chitchat a lot and because she is a rule follower I can see that they would think she is rude- but what she really is... Focused on doing her task and doing it right and working hard by the rules... After all the employee rule book says no socializing - work hard,greet customers and do t stand around when there's work to be done. Everyday I expect her to lose her job.

On to my more pertinent selfish topic... I feel guilty. I'm devastated. I didn't sign up for this. Why isn't she like others who grow up and marry a give their parents grandchildren? I am sad and angry and I almost feel the same kind of loss I did when my dad died / it's like the daughter I imagined and all my hopes and dreams are gone. The sad part is this all sounds horrible and mean but I love her SO much and that just makes me feel worse - I'm just emotionally exhausted. Is it normal to feel this grieved and so devastated and sad? Emily is such a beautiful soul and extremely loving and really kind on the inside - she is actually a hugger if she initiates it. I feel like I failed her by not seeing it sooner. We spent a year on ADD meds that seemed to make her worse, a year before that on anxiety a depression meds, homeschooled her from grade 3 through12, so we never really realized just how different she was and how stilted and uncomfortable her interactions are with others. And because we took her out of school at grade three- mainly because she was it able to read at all and was so distracted and zoned out all the time. I wish we had understood sooner.

Raisa - posted on 09/27/2014

23

0

0

Loved this. It is wonderful to know there are moms out there coping with this without having a clue as to how to make things better. Good luck to you and your family.

Raisa - posted on 09/27/2014

23

0

0

We are in this same boat -- thinking of getting him his own place, but really can't afford it, and we assume he will just stay in & behave in the same way so it won't be helpful really.

Raisa - posted on 09/03/2014

23

0

0

wish I could offer suggestions, but I really can't. Our son doesn't work, doesn't have friends, rarely goes out, has no motivation or interest and flies into rages too often. we love him unconditionally, but worry about his future. He is stuck and refuses to accept that anything is wrong, so will not get help....he used to get therapy but claimed it was useless, so we are in a corner with nowhere to go.

Pamela Jeanette - posted on 08/30/2014

1

0

0

Hi there,
You are not alone!
I think mothers dealing with Asperger adult children are brave, strong and amazing!!
They have had to deal with this for many years and have still hung in there despite the pain, hurt, they feel by being continually being treated badly as though their needs, feelings are nothing by their Asperger adult children.
They can kick you out of their lives because of something you did that they have totally blown out of proportion.
My son who is 30 still thinks I'm the biggest untrustworthy bitch because I went to England and he went to live with his dad when he was 17.
I had no idea he had Aspergers and that Asperger children have a terrible time accepting change. He said he enjoyed living with his dad.
He respects his dad highly and at this stage of my sons life he needed boundaries enforced that he would immediately accept from his dad, a good male role model who had worked hard to reach his goals, valued integrity etc.
My son told me that he did not want me to come back, he did not want me there.
He was horrible!
When I came back my son said the only way he could handle that I was gone, was to think of me as a bitch, even though he knew I was loving and kind.
He has never forgiven me for leaving, is abusive, angry, disrespectful.
Because he felt hurt when I left he wanted revenge and so he told me he no longer wanted me in his life.
He completely cut off communication!
It broke my heart! He does send a txt, very brief, every few mths, but his comments are either cruel, or crude.
We had a great relationship when I came home, we are so similar, sense of humor, knowledge of the world, but after a couple of years it deteriorated, he was demeaning abusive controlling. It was shortly after that he refused to have me in his life.
I hadn't seen him in 3 years. He mentioned he was changing jobs on Facebook, included the name and a map where his new job was.
He loves this pie I make so I wanted to show him that I cared about him! despite his attitude towards me? I knew he would be very angry if he saw me so when I came into the building with this pie, I told his colleague I just wanted to drop it of somewhere. He said Ok and I followed him down the hall thinking he was going to show me where to leave it. He asked if my son was expecting me, I said no, that's why I just want to drop it off.
Well he led me into my son's office!!
I thought Oh no!!
My son was in shock to see me.
He was unbelievably angry,furious he came towards me and I said if you yell at me I'm leaving so I left the pie on his desk and took off down the corridor.
Unfortunately it was the wrong one to reach the exit, and my son got there before me.
He opened the door and was going to follow me into the parking lot, he was yelling, I said I am not going into the parking lot with you unless someone is with me.
He stayed in the doorway as I went to my car? The anger and fury on his face was terrifying. He was aggressive, angry. He was looking at me like I was an evil bitch, it took my breath away! As I left he yelled If you come here again I'll call the police!
The sad thing is his anger is because he loves me and because I left, it hurt him very much.I was public enemy No 1 after that! I left 12 years ago and came back but his thoughts are rigid and he can't let that go.
He sent me a txt Stop hurting me, just go away! I feel just as hurt as he is that I cannot reach my son anymore, we used to have such a bond, we'd laugh, he'd call me up on his way home from work,tell me how his day went, I miss him and that relationship so much! However, he's been cruel before, disrespectful, demeaning, very abusive and after this incident I'd had enough.
I sent him an email, told him Because of his total lack of control I was scared of him so much so,I refused to be alone with him anymore. I told him his behavior was way beyond the bounds of common decency, I did not deserve his anger and if his behavior does not improve I refuse to see you even again. Goodbye.

I feel this incredible grief, for loss of the wonderful relationship we had,that his anger is because he loves me, he wouldn't be bothered otherwise, but his rigid beliefs about me have not changed. I'm still this bitch and I deserve all his incredible anger.
The tragedy is, because he has kicked me out of his life he has now lost his mum twice.
For me because he has Aspergers I would tolerate behavior that no other person would.
I feel I erred because even people with Aspergers need boundaries, need to act appropriately to others. Because he knew I loved him so much, he felt safe to act any way he wanted. I became a target for his anger.
I have put my foot down, told him my expectations and if he cannot follow them I do not wish to see him.
I had not seen him for 3 years because he did not want me in his life and it could be very possible I may never see him again, but one can only take so much.
I will keep in touch every so often so he knows the door is still open.
The therapist told me who's expertise is Adult Aspergers, that I might hear from him in a few years, but I must realize that it is just as possible, I may never see him again.
I am concentrating on my wellbeing, happiness now!
What my son decides to do is not my concern anymore.
I'm returning to NZ where I grew up, have a history, caring friends, people who value me think I have a great sense of humor and find me delightful to be around. I'm going back to my home, a country that has magnificent scenery and the most welcoming, friendly people you could ever wish to meet.
I have suffered depression, heartbreak, trauma dealing with my son.
I deserve happiness now, for me!

Yes, I think we mothers who have Asperger adult children are saints, unbelievably strong and deserve a medal for hanging on, way beyond the call of duty!
I wish you luck finding ways to communicate with your daughter, but still have your needs, boundaries, respected.
Now please go into your bedroom, put on your Wonder Woman outfit and soar to the stars, because we truly are Wonder Women!
I'll wave when I pass you through the Milky Way!!

Wendy - posted on 08/09/2014

8

0

0

Yes Belkis, we have tried leaving my son home with the responsibilities of a house and eats but I have to leave reminder lists or he would forget to do things. We had ny tried leaving him for a week at a time in the past and if we wee away he could work his casual ha because he couldn't cope with both, all too. Icy for him, so he would make himself unavailablefor work the week I had to go away, otherwise he just couldn't cope.
We did try leaving him for two weeks at the very longest, once again with lists, but he had terrible migraines basically the whole time we were absent. Just the stress of it all and being on his own. He used to always think he would like to be left alone to fend for himself, but after us giving him the opportunity to see how he copes, he now realises he can't for any extended period.
Yes many Asperger sufferers like our young adults seem to have trouble with doing
things in a timely manner. They can get chores done but at their own pace and at their own level. My son knows how to do many things around the house but just not in an orderly fashion because of a short attention span, or in a timely manner. And yes, you have to repeatedly remind them to do things like a child, even though they are an adult. It's like they just can't get everything together in their minds unless its of specific interest to them.
My son doesn't go anywhere either because he finds it too stressful to organise himself to plan anything and can't handle public transport.
I am lucky that I get on well with him and he is very respectful to me. But I don't have a life to myself and we can never go away for more than a week after our latest trial of 2 weeks. Was just all too much for him to cope with.
So I understand you

Belkis - posted on 08/08/2014

18

0

0

Wendy,

Sounds like Australia offers more support than the US. There is no pension for caregivers here. My daughter was approved for SSI (social security insurance), but is like your son is penalized if she works. My daughter needs a lot of reminding and it is exhausting. Right now, she has been consistently taking her medication, but we are having problems with her feeding and walking the dog on time. There is always something. She know how to take care of herself (laundry, cook etc) and can stay by herself when we go out of town, but I check up all the time. I am trying to prepare her to live alone (she is 24), Has you son stayed by himself for an extended period of time?. My daughter does not go anywhere,so I find that we need to get away by ourselves to recharge.

Raisa - posted on 08/05/2014

23

0

0

I feel so helpless and sad. I want my happy little boy back. He lost his last job because he was always late. I feel guilty all the time and feel responsible for helping him turn things around. It is awful to see your child waste his life. He has no set schedule, rarely goes out. The thing is, he does not seem bothered by any of it -- but we are, How can you not be?

Raisa - posted on 08/05/2014

23

0

0

The worst thing is feeling that you have failed your child when you have tried so many things, but they don't work. And absolutely nobody who doesn't deal with this can possibly understand. they call him lazy, call us nuts for putting up with him. but he has tried many times and failed. he wants to succeed but doesn't know how. and we don't know what else to try. he was such a happy little boy -- we never expected this. Our lives revolve around him and this is seriously affecting our marriage. Help!

Raisa - posted on 08/05/2014

23

0

0

I have a 33 year old AS son. Lives at home. Unemployed. The big problem is he won't accept anything is wrong. Absolutely will not go to anything related to AS. We're exhausted & don't know what to do. We love him so much & hate to see him alone in his room all day. Any suggestions?

Wendy - posted on 08/04/2014

8

0

0

You sound must like my daughter. She was the lucky one who sailed through life and left home just as our son was diagnosed with Aspergers 10 hrs ago.
My son who was very bright struggled academically and the school was no help so we ended up home schooling him so that he could work at his own pace and take an additional year to complete his senior years.
His aunt worked at the library where we managed to get him some work experience. He loved it so much he put his name down for work on their casual team when he finished school. Some months later they put him on a couple of hrs a week. He managed two 3 hr shifts each week without too much trouble. After 4 yrs many changes happened which people with the condition don't cope with and he lost his work in the end. He couldn't keep up the charade of hiding his problems and they didn't want to make any allowances for him. That gutted him so much he retreated back into his shell.

You see you can try to lead a horse to water, but you can't make it drink.

For a person with Aspergers you can try to help them cope with life but it takes the smallest thing to put them right back to square one. It takes very little for them to lose what little confidence they manage to muster at times.

Life is a nightmare for them and their parents.

We the parents feel a life long responsibility for having chosen to have them in the first place and its not their fault they were born with a disability that will affect them all their life.

I too will have to leave my house to my so when I die otherwise he would end up n the street.

It's all very well to say they should be taught live skills and that the parents should have done more so that the Aspie can get on with life, but have you any idea how draining it is 24/7 raising an Aspie child, adolescent then adult? From the parents point of view its exhausting because you get to the point where you are sick of banging your head against a brick wall for answers, for help, for support when in the last 10 yrs there was very little about or k own about the condition.

My daughter thinks her brother uses his condition as a cop out, but he has spent 4 yrs trying desperately to work to be able to live a 'normal' life. It's never going to happen.

He shuts down at interviews in a way a normal person doesn't. It's more than nerves. It's being confronted by a panel of strangers. You see I can make him look good on paper with his abilities in certain areas, but he fails in the communication area big time and great communication skills is what people want.

So you get to a point like we did where you have to do something which is why we applied for disability support for him. Now he is on a pension and I am on a partial Carer pension to be able to continue to support and care for him.

Things that matter to you or I don't to an Aspie, they don't see the point In changing clothes, Washing their hair or having a shower. They cope best by living in their own little world. They have terrible time management, are very forgetful and make unreliable employees because of it. They just don't see the point in doing things the rest of us take for granted.
You can't help someone when you don't fully understand their problems, and even with the knowledge you are fighting a losing battle.
So don't be too hard on your parents. I struggle with my own daughter and what she thinks of her Aspie brother and what she thinks he should be doing.
If aspies weren't high functioning and had worse autism condition, would you be feeling the same way about him.
Just because SS didn't consider him eligible for help doesn't mean he doesn't need it. It just means the for s probably weren't filled out in such a way to show the full picture.
I had the same trouble when we applied. I worked out we weren't considering the questions in the right manner, hence our answers didn't fully show what our son was dealing with and the type of support he needs.

Just accept that your parents are just doing the best they can, rather than your brother being a bum living on the streets because that is what happens to many, they become one of the homeless!

Wendy - posted on 08/04/2014

8

0

0

It depends where you .ive as to what support is available. Here in Australia the main cities have on the ground groups that you can be in contact with attend gatherings to share problems etc. but if you live in the country you are pretty much on your own. Even trying to find a psychologist experienced with young adults with ASDs like Aspergers in the country's near impossible which is why we parents are pretty much on our own to try and help our children to work out coping strategies to adult life after having battled through the stress of school. Like many I used to hope that things would improve with age but that was just a dream. In fact now I think it will only get worse as they become isolated from the world and set in their ways.
If your young adult has had a clinical diagnoses here in Australia you can apply to centrelink for a disability support pension for them. You need the support of your Dr to do this as he must complete a report. Centrelink use a points assessment to determine eligibility which means you have to score 20 or above to have it approved. Most with Aspergers have other health problems to deal with too and it's Important to include them
all. Once you get the pension for them if they are living at home with you and you have been their primary Carer to cope with personal hygiene and general living skills etc then you should apply for the Carer pension or Carer allowance for yourself. These also require a Dra report. If you and your Aspie as we call them manage to get the pension or even a part pension, then you will get a government concession card that will help with bills like council rates, motor vehicle registration, scripts, transport which helps the family financially.
Regardless what the form says you need to consider what your Aspie is like on their worst day and consider what they would be like trying to live on their own to have the best chance of being approved.
Even though aspies are physically capable of doing everyday things they usually don't because they can be very forgetful needing lists to remind them of things, or don't see the point in wearing clean clothes each day because they don't go anywhere or see anyone. The same goes for Personal hygiene for same reasons.
They may have OCD about everything or live In an absolute mess and consider your need to clean and try and keep things tidy as being obsessed yourself.
Left alone they would live in kaos and as a recluse which makes me wonder how many people who live like this have Aspergers and don't even know they do, never having heard of it.
The problem I found was none tells you anything, not even the medicos about the financial support that is out there when you get to the point that you can no longer try and hold down a job while living with a young person with Aspergers, just as they get to a point where they can no longer do the battle of trying to either find a job or keep it for any length of time. If they find something it is usually casual for minimal hrs which they can't really live on.
But did you know that once they get the disability support pension that if they manage to find a few hrs work it may not affect their pension.
Mine got 1 days work a week and even though he lost a little of the pension, with his pay he ended up being $100 better off. Trouble is the jobs don't last or the Adpie doesn't, ending up having a melt down due to too much change for them to cope with.
Other family members who leave home just when you have the other diagnosed, never seem to fully understand what you are dealing with. They think the condition is a cop out to get out of doing things or having a go. They think because life sails along for them that their sibling needs to get off their bum and get on with life. Trouble is our Aspies don't think way the rest do, don't understand the way the rest do, can't handle change, are sensitive to light sound and smells. Often have melt downs, suffer with depression and the list goes on and one. The sibling who breezes through life just has no idea what life is really like back at home for their parents or the Aspie sibling because unless you have lived with the condition or with a person with the condition previously diagnosed, being told about things from home and the challenges experienced and its impact, just aren't understood.
It's like what they say.....if you haven't walked a mile In the shoes, you have no idea how it feels.
Dealing with centrelink has been a real education but everyone has been very helpful as the disability section has a very different attitude to the general unemployed.
I have discovered now they score answers to questions and that even if you have to supervise or prompt your Aspie to do basic everyday things like showering, washing hair etc. cleaning teeth etc, then you tick the box that they need help or are dependant, because without you there to support them they wouldn't bother doing any of it if they tried to live alone.
Our Aspie children regardless of age unfortunately always need our support to cope with life. The worryis what happens when we die!!!

Sakiko - posted on 06/29/2014

15

0

4

Hi my name is saki . I feel exactly same way about my daughter. She is 17 years old. She cann't handle her 4 yeard old little sister, because she can't handle all noises and comotion from little sister. She also has PTSD. She is so bully me and her little sister everyday. She cannot handle all her anger and pressure. When she blow out, she start pick on us, mimic us, and command us very badly. I i don't know what to do. I don't have any advise, but just want to tell you that I am in exactly same situation. I feel for you.

Sakiko - posted on 06/28/2014

15

0

4

I feel for you. My daughter treat me same way as your son treat you. She break my heart. I cried all the time when I am alone. I have no idea what to make her feel better. What ever I said she get mad, and bully to me and 4 years old daughter. I tried to stay away from her. One day she came to me and she ssid i don 't love her and don't care about her. What ever I say or I do, she get mad at me snd start call me name, curse at me, and bully me.

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms