Parent of Adult Child with Asperger's Syndrome

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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.

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Jane - posted on 04/07/2013

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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

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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

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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

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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

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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 !

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No - posted 2 days ago

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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.

Nicole M - posted on 06/25/2014

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I am a step - mother to a now adult ASD child (19). I married my husband when the child was 16 and attempted to raise him. It was so difficult. My husband had been married for 16 years and the wife had major psych issues herself. She ended up committing suicide when her two boys were 15, 13. Later, I came into their life and we married. The ASD child was agressive with me and tried to constantly manipulate me. You could see he didn't care about anyone and just wanted what he wanted. He lied all the time. My husband and I noticed he talked a lot about the "little stupid people" in the world and how he was so much better than all of us. He talked about killing others and not himself because he was too special. We sought out counseling for him and he was going for about 6 months when we found out he was lying to the counselor. It then progressed the next couple months to him writing a letter detailing how he was going to murder us. My husband (God Bless him) Baker Acted his own child and the child 17 years old and 354 days to a psych hospital. The child told the counselors he was wanting to kill people just because. Well he turned 18 and they let him out. Go figure. We fought to make him stay and they wouldn't. The legal red tape to get him to a state facility or even a private is unbelievable. They basically told us we would have to get him to agree and of course he didn't. We decided it was our way or no way. We closed our front doors to him. He either went to get help or he was completely on his own. He choose on his own. He somehow even joined the ARMY and now they are kicking him out because they have found out what we already knew. Now the child is coming back to the area we live and we are concerned. He refuses to get mental health treatment and he is a very real threat to our family. We are under a lot of stress since I think he is capable of actually killing us but no one will do anything. Plus, you love them but you can't be anywhere near them and then trying to explain to his now 17 year old brother he can't have a relationship with him or see him after his mother committing suicide is just aweful!!!! I don't know what to do... I feel like we did the right thing but why doesn't it make anything better...
HELP MENTALLY.....

Belkis - posted on 06/10/2014

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Holli,

I too feel tremendous disappointment with my daughter's school system and the psychology profession. I knew my daughter had something more than just ADHD. I went to countless psychiatrists and asked if she was autistic(asked at least 6 or 7 psychiatrists in her lifetime). I was told she was bi-polar,anti social and had oppositional defiant disorder. She finally got the right diagnosis, PDD, last year at 23. In my opinion, being born in the 90s (when autism spectrum disorder was in its infancy) caused her to fall through the cracks. Unfortunately, she got labeled with the disease of the decade at that time, ADHD.

Holli - posted on 06/10/2014

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I have an aspy son who was diagnosed at age 17. He is now 19. The best way to describe our home is exhausting. I have always known my son was a little different. No one seems to understand how hard it can be to parent a child with this diagnosis. His rages are unbearable at times. I feel bad for him and can't imagine what goes on in his overactive brain, but I also feel obligated to teach him coping skills and to know right from wrong. I don't want him to think he can do or act the way he does at times, without consequence. I want my son to have a happy life, but sometimes feel he will always struggle. It's sad really. He's so smart and creative. He works for our family company and does well, but if he gets angry he says I'm not going to work and that affects our operations. I always feel like he wants to punish me when he messes up and I try to point that out to him. Making him take responsibility for his actions is our biggest struggle. He is a beautiful man with so much possibility but I know his life will be harder than most. I feel let down by our school system and the 3 pshycologists I took him to through the years. One told me he was a sociopath, one told me he was a brat and the other said adhd. All the years I could have doing things differently with some professional help.

Lester - posted on 06/02/2014

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Me and my wife are disabled and I just can't deal with our daugther anymore,i'm at the point I'm thing of fileing for a divorce cause she is so bad?All i get is $721.00 a month and this child has done everything to destore or life?She has been put in jail for assult several times in the past.She was in a mental unit for 7 months and they couldn't help her.She lost her disabilty and SSI will not help her anymore?What can I do Legal to stop vthis before she ruins me and my wives life?We never have any Peace,Please help?lestermolton@yahoo.com

Nancy - posted on 05/11/2014

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I have a 21 year old son who was diagnosed with PDD at age 3, though the diagnosis changed to Aspergers later on. He is academically gifted with an eidetic memory for numbers. He is at college 4.5 hours away majoring in both electrical engineering and mathematics, in which he is already in graduate courses and has a perfect GPA. He'll be spending most of this summer at Williams College doing research in Number Theory.
We used to be so close when he lived at home. Now he is only home a few weeks out of the year. When he is here he is disrespectful, angry, and seems to pick fights about even the most innocent things. He keeps saying he's an adult and can make his own decisions, that he has his own life and that I have no control over him anymore. I tell him that is fine, he makes good choices and I respect him. This week he told me he renounced Catholicism and became an atheist. I told him I love him no matter what his beliefs are because I feel he is a good and moral person. A few days later he told me he is still Catholic and that he was conducting a social experiment to see how I would respond. I think he purposely attempts to shock me or say things to distress me. I noticed he no longer showers or wears deodorant regularly and tried to gently guide him to pay more attention to hygiene, which caused him to shower less.
I love him more than anything and miss him all the time when he is at school. When he is here I shower him with love because I am so happy just to be in his presence. I make his favorite foods, buy him gifts, wait on him hand and foot because he refuses to even pour himself his cereal in the morning. Seriously, if I am away for the day he won't even eat a banana on his own. He will just sit in his room obsessively doing math equations and starve. He is 6'2" and weighs 115 pouds.
He had his wisdom teeth removed a few days ago and I have organized and given all his meds, salt water rinses, and diet of soft foods. Tonight when he complained of pain I prepared his med, pudding, and rinse, then called him to come down from his room. He didn't come down. When I went upstairs he threw a fit saying it is his right to have privacy and be alone in his room when he wants to, and he doesnt have to acknowledge me if I call to him. He appreciates nothing and treated me horribly. I told him I was putting him in charge of his own meds. He has now missed his antibiotic.
I just want to have a good relationship with my son as an adult, but he seems determined to push me away and I can't figure out why. I gave up my job as a registered nurse and spent years working with him so he could have the best possible future. I love him and accept him for who he is. I am proud of him and am his biggest cheerleader. I feel as though I'm no longer relevant in his life.
I would love to connect with others in similar circumstances. I am so sad about what is happening with our relationship. I don't understand why this is happening. I'm afraid that when he finishes grad school and no longer needs financial support that we'll never see him again.

Sincerely,

Nancy Dynes

Sandie - posted on 05/04/2014

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Hi. I'm the mom of a 23 year old son. After doing a lot of research I have come to realize my son is an Aspie. But I haven't always known exactly what is going on with him. When he went to kindergarten he had a hard time adjusting but so do a lot of children especially for an only child. When his teacher told us that he was going to fail kindergarten and that she thought he had ADD we decided to have him tested. He was diagnosed with ADHD. He also had the quirky habit of having to shake something all the time. So when he was going through the testing process I asked the Dr if he could possibly be autistic and was told no. In 1st grade Jesse did a little better, and his teacher was fantastic. But he was small for his age and seemed to get picked on all the time. My husband and I made the decision to homeschool him. At home he seemed to do better, was more relaxed and no longer required adderall. He had so much trouble sleeping and eating while on it that I was happy to take him off of it. As the years went by we had difficulties. He would take 7 hours to do 3 hours of schoolwork. He preferred to play video games and be alone in his room than play with the neighbor kids. And other things, he didn't seem to feel compassion or empathy for anyone. I thought maybe its a boy thing, maybe he's too spoiled. He has always been highly intelligent, can converse with children and adults alike. But has never had a best friend. Had trouble reading social cues, didn't seem to understand figures of speech. Was afraid of things other kids loved such as riding a bicycle. He is 23 and still doesn't have a learners permit or drive at all. I kept thinking as he got older he would outgrow it. My husband and I worked at a religious college. Jesse obtained his GED and began attending college there. But my husband and I had difference with the religion and left. But Jesse chose to remain. He maintained for a while but soon his health was suffering because the schedule was too rigorous and he wasn't eating and sleeping properly. He came home to us. His health returned and he then went back. After another year it was too difficult and he returned home again. And this time has stayed. That was 2 years ago. My son is extremely religious, I would almost say a zealot. But now I have realized it is because he is obsessing with religion the way he did with video games years ago. In the past 2 years we have begged and pleaded for him to get a learners permit, to move forward in his life. He stays in his room and reads the bible and studies the computer all the time. He only comes out for meals but that is only about once a day. He is 5' 8" and only weighs 115 lbs. He goes on fasts because he is praying for peoples salvation. He won't get a drivers license because he says God is asking him to prove a point to someone. He has had these fictional relationships with 2 girls who he went to college with but now live in different states but they never cared for him and there never was a relationship. He has basically cyberstalked them and badgered them to where they have nothing to do with him. He is somewhat involved in his church but is so good at speaking with people and has even preached and taught classes, that they have no idea of what he is really like at home. He will not listen to anything his dad and I say because we are no longer in the church and cannot understand God's will for him and aren't capable of giving him good advice. I have begged and pleaded with him to go to counseling but he says he is an adult and he doesn't have to do that. I've tried talking to him about aspergers but he says he is fine, that it's my husband and I that have the problem. I've threatened him that he will have to move out if he doesn't improve, come out of his room, get a learners permit etc. He appears to make progress but in a week or two things are back to the same thing. I'm seeing him letting his life pass him by, I'm worried about his future. What if something were to happen to my husband and myself? What is going to happen to him when we're gone someday? How can I get him to listen to reason and see a dr for evaluation and treatment? Please help.

Marsha Adsit - posted on 05/03/2014

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There are books on dealing with adult children who have AS. Perhaps some of them would be helpful to you. But you are right - there isn't much out there (that I've found) that really goes to the heart of what we ALL seem to be feeling. I found this site not too very long ago and it has been so comforting. You know when my boys (now 24 &26) were both diagnosed with AS, I slowly drew away from neighbors and friends. When I had a concern about my boys, the response was always "oh that's the way all kids are" or something to that affect. But their stories and comments were completely foreign to the life we were living. And that makes perfect sense now that I can look back on the experience. How could anyone understand the intense things I was going through as a mother if they too hadn't experienced similar things...One mother even told me that "I was lucky to have a child with AS". My child was not social and she said that "I had no idea how tiring it was to drive her girls to soccer practice, Brownies and dance class"!!!! No, I just had doctors and specialists....So this site is a place to share whatever you are feeling and knowing others can identify with those feelings....Hope you come back.

Marsha Adsit - posted on 04/24/2014

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I just reread all of your comments. The familiar thread of loss, worry, hopelessness is in each and every entry. But just as strong is the thread of love for our children. My boys are 24 & 26 and both have AS. As they have gotten older the differences have become more and more apparent. Sorry, I have no suggestions other than the ones you all have shared. I would like to see workshops to address the concerns we have with our adult children who just happen to have AS. I want to see organizations that recognize what we all are living with day in and day out. Our concerns are real and they are immediate. The validation I've seen by all of you has made my burden easier to carry......I just wondering if we were to contact AS organizations and state the things that we are all feeling perhaps somewhere along the line are voices would be heard. If I come upon anything I will share it here.....I said in an earlier entry that our children were the first generation of recognized AS kids. That goes for us too.

Amy - posted on 04/23/2014

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Doria, I have a similar son, but mine isn't even working. He is so lost and dangerously depressed.

There are resources depending on where you live. I've taken my son to the state vocational rehabilitation agency local office. They can test him and help with job/training/career/social skills services. I'm not sure how it might work if yours is already working, but it's worth a try.

I've also bought two courses from AspergerExperts.com. Good info and stuff there for him and you.

I found lots of info just googling "adult aspergers". Autism speaks is a good resource. You can also call 211 for local autism spectrum services. Tons for kids, far less for adults. I found the adult services by just calling everyplace, even for kids, I could find. There may be an aspergers support group or social skills groups near you. Networking. Like I have tons of time for that.

I have always had to force my son to do even basic self care and all socializing. He truly does not understand why he can't just live with me forever. God it's exhausting. Hang in there and get yours into something and away from you if you can. Does he have a special interest? Can that be a basis for socializing or job training? I'm going on Prozac soon- it's better than beer I guess.

Amy - posted on 04/23/2014

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Julie, I'm in Dallas and my son was just diagnosed at age 19. I'm a wreck too, and so tired raising a child with an unnamed disability all these years. I knew he was different but I just thought parenting was supposed to be that hard. I've been researching nonstop and would be glad to send you a list of area resources I've been compiling. I've also found some great books on adult aspergers, and have bought some of the courses from AspergerExperts.com. I'm going on Prozac soon myself. It's time.

Sending much love and many hugs to the caregivers on this thread. I've found such judgement of me and my son- and have given up trying to explain to ignorant people. I've done nothing but raise him right all his life. People can be so cruel. This is ripping apart my family, my son is so lost and depressed that I can't let him be home alone while I'm at work. He sends me suicidal texts- and I'm actually thankful he trusts me enough to tell me. How messed up is that? I have no choice but to stay calm but the price is a constant pit in my stomach and terror every day. He needs stability so badly. Just getting a diagnosis and testing as an adult has been hell, much less everything else. I'm a single mom and have to work- of course no services seem to function after hours.

A great facebook page I found is "confessions of an aspergers mom". Y'all might find some comfort there as I have.

Sending love to you and your family.

Marsha Adsit - posted on 04/04/2014

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Angie, I just saw your second message and I have an idea. Years ago I attended a workshop given by Tony Attwood. He is an author who is wonderfully knowledgeable about AS. While I was there I met Karen Rodman. Karen started a site called FAAAS, It stands for Families Affected by Asperger's Syndrome. Today I found a book they had written a book together. You may want to check out those 2 sources. I am so excited and cannot wait to delve into their new info. Just an idea for you too.....Marsha

Marsha Adsit - posted on 04/04/2014

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Angie, I think looking at the big picture is important unfortunately I haven't been able to do that! I am like you. I think we are in an unique situation. We want our kids to do all the things that young adults are capable of doing but how does that happen with our kids. I just keep thinking we are tackling new ground and I don't know where to go. I like your suggestion to take time for myself (and I do) but now and then I feel a bit lost. I too have fibromyalsia. I don't have a lot of answers but it is sooooo good to know I am not the only mother out there who is the parent of a young adult with AS. Thanks for writing back, Angie.

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