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.

MOST HELPFUL POSTS

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 !

323 Comments

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Diane - posted 6 days ago

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Hi, my son Ben is 25 and has Aspergers. It would benefit him if he could converse with another person that has the same diagnosis.
His email is cafeloco12@gmail.com and mine is dileodiane@gmail.com.
I am hoping to hear from someone.
Hugs!

Michelle - posted 6 days ago

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Hi! My son will be 21 years old in a few months. After dealing with, as you said "His response was way more emotional than it needed to be" for so many years, I'm one burned out Mom! If he would just let us help him and let us guide him life would be so much less painful for him. Even the psychologist he saw for about 3 years stopped seeing him because he just didn't see the problem so didn't think he needed help. It's just so sad to know you can't help your child!

Traci Lin - posted on 02/03/2016

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Hi, my name is Traci and I am the 47 year-old, single parent of a wonderful 18 year-old son with Asperger's Syndrome. I know that many parents start these comments off with how awful life is around their adult Aspie child and how worried they are about what may happen and I have days like that too. But I also have days that I am blown away by the sweetness my son exhibits. It is almost like the times he does act with sweetness or consideration are all the more sweet because they are not a regular occurrence,

My son's name is Luke and he is just recently been diagnosed with AS. Until about a month ago he was pretty much considered a behavior problem, OCD, ODD, Anxiety, along with intermittent explosive disorder, defiant, inappropriate, arrogant, narcissistic, unempathetic, and overall jerk. We walked on never-ending eggshells around our house and just hoped that it would be a good day and we wouldn't experience too many meltdowns. Anyone that is the parent to an aspie teenager or adult child will tell you that this method of maintaining has a slim to none chance of working and leaves us neurotypical moms and dads feeling adrenaline lagged and neurotic,

Now that I have a little more insight into the planet my son has been inhabiting, I am trying hard to see things from his point of view. Any help anyone has with this would be so appreciated.

For example, tonight, while unloading the dishwasher, my son was a bit careless and slammed the bottom rack into the washer. His aunt, who was sitting at the dining room table, happened to notice and told him not to slam things around, Luke instantly flew off the handle and started going on belligerently about how he wasn't slamming things and didn't need us on his ass about something he wasn't doing. His response was way more emotional than it needed to be and left us stunned.

So you expert moms and dads out there, tell me why he responded that way and what he was experiencing from his point of view, and how I could of handled it better that would have worked better for us both. Thank you, CoM's :)

Judy - posted on 02/02/2016

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Hi Lise,

I am a mum with an 9 year old aspie son and looking for a forum as a form of support and advice for myself, as my son was only diagnosed last year. Did you find anywhere when you posted here.

Thanks for any help

Cheers

Judy

Yolanda - posted on 01/31/2016

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My son is 17 and every morning when I hear his foot steps a feeling of doom goes through my husband and me and we just wait to see if he has decided to be in a grumpy mood or normal.. he yells, screams and forget to have him do anything around the house... he is going to therapy and sees a psychiatrist since he was 6. His anger and looks has made us all lock our doors at night when we go to bed in fear that he may harm us. I don't see the light at the end of the tunnel thinking he will have to stay with me forever and I just wanna die... his anger and disrespect is so tremendous it takes over our lives.

Michelle - posted on 01/29/2016

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It's been a while since I posted. My son did get an official diagnosis. He has been going to therapy for his anxiety/depression issues. He started taking some anxiety medication. He acknowledged he was wrong to quit the job he had with us before finding another job. Our business has since slowed some so we don't have a lot of work for him, but have been giving him some when we have it. He did decide to put of the marriage until he could get himself together, which is very positive. All in all, his general attitude has been better and we are glad about that. He still has had no luck on the job front, and now seems to think he can teach himself programming and land a programming job. We told him that isn't something easy to do on your own. Especially with his track record of not being self disciplined. We told him he would be better off taking some courses. He is supposed to be checking into some job training today at the local employment office and seeing what he qualifies for. This is a long road, especially when they are adults and it is so hard to watch them struggle. Hugs to you all!

JULIE - posted on 01/26/2016

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My son is 23 and we are facing the same exact issues. I wish I had an answer for you but I am asking the same questions right now. In some ways my son seems to act younger now than he did. He likes to be "right" about everything, no humility. We are working on it and I am actively looking up information for any help or advice that might be available. Please know that you are not alone!! Hang in there for the love of our children.

Kristie - posted on 01/06/2016

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My son does the same thing, especially when there is someone else around. I have just decided to totally ignore him when he does this and tell him later what I thought and felt and ask him if he would like it if I started talking to him that way. Or I will act like I am him and he is me and answer him like he does me. He is especially good at ignoring me and not answering me, so I do the same to him when he tries to talk to me about his stuff, he does not like that a bit. So I tell him well that is how I feel when you do it to me.
One of the major traits of Aspergers is that they don't know how to respond to conversations and other forms of communication. I am always try remembering this and typically ignore it and talk to him later about it. And if we are at home, if he says something REALLY mean I will give him a punishment and also a talk about why he shouldn't be talking that way. So just keep in mind that they may not be doing it on purpose. They need our guidance in this area particularly.

Kristie - posted on 01/06/2016

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Hello, don't beat yourself up about not finding out til later. Asperger's just became more known, but I meet many people everyday that don't even know what it is to this day. Also, there are so many different fine lines to get an actual diagnosis of this and many are wrongfully diagnosed with thing like ADHD instead. The important thing is that you know now, so just move forward. If you keep looking back it will stop the many accomplishments that get made now. I have an 18 year old boy and he was officially diagnosed when he was 14. I have also found it very difficult to find any help locally as well. I get frustrated about this too.

Helen - posted on 12/27/2015

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I think my son who's 22 has aspergers but my gp does not want to know because he didn't present with problems has a child but is socially isolated has an a year ago and has ignored all his friends and is anxious has an adult feeling really depressed by this

Migdalia - posted on 12/26/2015

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I joined group for support. My daughter is 22 and is in the process of being evaluated for Aspergers Syndrome. As a parent I am frustrated that this was not caught early.

Jo - posted on 12/21/2015

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Hello moms- I wanted to share this article. No answers for us at this moment, but this article makes me very hopeful. As many of you know, no amount or type of counseling or therapy is going to make a damn bit of difference. The answer is out there...is just hasn't arrived yet.
https://medicine.buffalo.edu/news_and_events/research-news.host.htm/content/shared/subs/news/2015/07/yan-autism-4839.detail.html
Merry Christmas
Well, that didn't work! Try this: Google ' University buffalo autism Yan '

Lise - posted on 10/20/2015

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Hi Robin, that happened to me and it turned out that you need to join and be logged in to be able to see the reply button. Hope that helps.

Lise - posted on 10/19/2015

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Hi Robin, that happened to me and it turned out that you need to join and be logged in to be able to see the reply button. Hope that helps.

Tim - posted on 10/19/2015

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Thats great Anne. Keeping the right perspective is the everlasting fight for a parent of a special needs child. Hang in there with it all since it sounds like you are doing great.

Anne - posted on 10/19/2015

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Thanks Tim! I think you are right; lighthearted, consistent, and clear. If I'm not lighthearted, he could slip back into his depression by feeling beat up on. I just need to work on the consistency, so I don't blow when my limit has been reached. I will try harder to be clear by stating that the comment was unacceptable or unkind, and then move on to where we were before the comment was made. I use to explain how it made me feel, but that doesn't seem to work for him. He tends to argue if you say too much. I will go over this with his dad and younger sister, who especially feels bullied, so we all can try to be consistent.

You are a blessing helping me to keep things in perspective. As I'm sure you know, sometimes our better judgement gets clouded with frustration and stress. I wouldn't be here if I didn't love him deeply and want to help him succeed. Thanks again!

Tim - posted on 10/18/2015

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Hi Anne,
This is a challenging problem to face. With that said, I certainly don't think you are alone and see this as something very common. My advice would be first to commit to addressing this as an issue. Chances are, you wouldn't allow a friend or extended family member treat you like this so don't think that it is alright for your son to. Even though he has some special needs, the saying "You threat people how to treat you" is absoutely in play, especially since you don't think he treats his own friends in this way.

So you believe it is a problem to be fixed, the next question is how to approach it. In my view the best way to do this is lighthearted, consistent and clear. This has to be done lighthearted since all kids and young adults are wired to push adults away. If you take offense to these interactions and come in as the "heavy" it invariably ends up in a fight and no one really wins. Your son very well may not understand how rude he is being or how it is affecting the family. (remember how self obsessed you were in your twenties and you get the picture.)

Consistentcy has to be there so there isn't wiggle room. Once you have detailed the expectations it is also alright for natural consequences to be in play. For example, I dont' know if I would be rushing to invite him to the next dinner out. What is important to remember her is that you state what you expect and you acknowledge when it doesn't happen. These acknowledgments do not have to be fights, but more observations about when he is being rude.

Clarity is important since there can't be confusion. If he is able to be rude to you one day with no followup, but then you completely lose your temper when he does it again, the problem no longer seems to be with his actions, but with your reactions. You want all the responsibility clearly on his shoulders.

Chances are this type of behavior has been going on for a while so there is a certain dynamic set in place that will not go away over night. Understand that this is a process, but you do not have to continue to allow it with no response. If something has you stuck, let me know and I will happily provide any advice I can. Good luck. Tim

Anne - posted on 10/17/2015

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I have a question for anyone who has experienced this. How do you respond when when your son/daughter is rude and short with their comments? Appearing arrogant? We went out to dinner tonight and it seemed like almost anything that was said was responded to in a short condescending manner by our son. What was suppose to be an enjoyable time turned into a strained uncomfortable mealtime. We have tried in the past to confront it politely by saying lightheartedly, "that wasn't very nice," but that turns into a "I didn't do anything wrong" argument with him withdrawing into himself. We usually try ignoring it or change the subject, but that usually doesn't stop the verbal abuse he inflicts on his family. I don't think he does this to his friends, but of course am not always with him to know. I feel like the stress and anxiety he feels is released on us, his family. But don't know how to correct the behavior. He brings a lot of the stress on himself by "taking the hard road," not willing to listen to an easier way. Very frustrating and heartbreaking because he is such a good person. If it was anyone else, it wouldn't be tolerated. How would you approach this? He definitely has a hard time, but brings so much of it on himself. Suggestions or comments?

Anne - posted on 10/15/2015

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Hi Robin! I don't know the answer to your question, I'm new to this too! I just wanted to let you know you are not alone in your struggles. I believe each of the young adults represented here are at varying degrees of their own struggles. We as moms may not have the answers, but we can be supportive of one another and share what we do know. But there are times when we just don't know what's right nor what works. This is a very lonely time because only people who experience this will understand. Feel free to share, someone out there may have a suggestion and know of resources that are helpful. Hope this is encouraging...we know what you are going through. Sending hugs!

Robin - posted on 10/14/2015

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I've tried to respond to individual posts but my comments just show up on the top of the list. How can you connect with anyone when you can reply to them?

Robin - posted on 10/12/2015

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Your situation is very similar to mine only I have an 18 year old daughter. I've had her to tons of doctors and seen by the child study team at her school no one could pinpoint what exactly was wrong with her. I took her out of school and put her in online school for the same reason you didn't make your son finish school and that was a very stressful decision my stomach was in knots. I have a chronic illness which leaves me with a lot of pain and fatigue so everything has been 10 times more difficult for me then it was when I was healthy but I have been doing a lot of research and I can not find anything available in my area that will help my daughter. She is also I believe afraid of going to college and has no idea what she wants to study. She's really talented at computer graphics and has worked on doing art work for some video game characters that could have provided her with an income but it never panned out. I would love to see her use her talent and knowledge of the computer to turn into a career. I'm hoping that she will decide to study this in college or on online college but she really wants a year to decide. She just turned 18 in August so she wouldn't be behind other kids her age if she started college next September but I think she is telling me this just to get me off of her back. Anyway I'm rambling, I have no one to talk to about any of this so I could easily write a book right now. :) I'd love to keep in touch.

Robin - posted on 10/12/2015

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My daughter is the same way. She missed so much school over her lifetime, I would get letters all the time saying that if she missed anymore days I would have to go to court and would end up getting fined. She failed classes and had to do summer school every year. The summer after 11th grade she said she would not go back to school for her senior year, she was depressed and extremely anxious just thinking about it and she would raise her voice, slam things, break things so against my better judgement I let her drop out of school with a promise from her that she would get her GED. She then decided that she could not handle being around kids that she did not know and that getting a ged was going to be to hard for her so I decided to sign her up for online HS because she spends all of her time online anyway. It's been a very hard year but thankfully she finished school this week with a 90 average. She plans on spending her time staying in her room and playing on the computer and with her nintendo ds. I can not get her to do chores either, she won't even change her cloths or go out anywhere. She's had one job it was a temporary summer job last year and she has no plans on finding another job. It takes everything I have in me not to scream my head off at her. I don't have any advice for you because I can't figure this out either. If your sons mother is in touch maybe you could work out a deal where he lives with her part time and you part time. One thing I do know is these kids are not acting this way because they are bad kids it's that they get overwhelmed by everything so easily. I find that if I want to get mine to do something I have to give her one chore at a time and be patient if she doesn't do it right away I'll have to tell her for a few days sometimes and she can never do something as soon as I ask her I always have to tell her that in 15 minutes I need you too empty the garbage from your room. My daughter has been alive for 18 years but she is more like a 14 or 15 year old and I treat her very gently. I understand your frustration but please don't throw him out like his mother did that will destroy him beyond repair.
I wish you both the best.

Gayle - posted on 10/08/2015

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Does anyone think my son could possibly have Asperger's?Any thoughts are much appreciated! thank you

Michelle - posted on 10/07/2015

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We are having such a hard time with him right now. He is barely talking to us. We have a family business in which he worked for us for many years (we are small and only have part time sporadic work available, but at least it was something). He quit at the end of the summer and told us we should give the job to "someone who likes it." I told him it was inadvisable to quit before having another job lined up, but he wouldn't listen. He originally was going to go to seminary, but then changed his mind. Since then, he has been floundering around applying for all kinds of jobs he isn't qualified for (by emailing resumes around). He has taken to applying at grocery stores and department stores, and can't even land a job at those places either. It makes me sad, that he has a degree and can't get a decent job. He knows we want him to postpone his marriage while he gets help and finds a stable job, and he is very angry with us. So he refuses to listen to anything we say right now. I'll let you know how the appointment goes on Friday. Praying we can get him help. Thank you for the hugs and encouragement.

Anne - posted on 10/07/2015

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You deserve a big hug for helping your son graduate college! I know sometimes our efforts go unappreciated by our child, but oh what a difference this will make in his life! I like to think all our efforts have an impact, sometimes the hardest part is deciding what is right for our particular child. We are also struggling with the job aspect. I know my son does so much better when he has an agenda. As with anyone, it helps give him self worth. I'm finding that big things, such as job searching, need more than just encouragement. You have to almost hold their hand (without insulting their ability). I think fear of failure or rejection plays a big part in this. Heck, we are all intimidated, can you imagine what it would feel like if you can been ridiculed or rejected most of your life? No advice on this right now, as we are still trying to find something that works. But I do believe putting the tools in his hand, teaching and showing by example, and building his self worth play a big part in it. Good luck!

Michelle - posted on 10/06/2015

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You are so right! That is exactly when we noticed as well. I thought he was a bit "quirky" but chalked it up to his high intelligence. He always had trouble making friends, and then he was disorganized and would fall behind in school due to forgetting homework, etc. He ended up dropping out of high school his senior year and I pressured him to take dual credit classes at the community college so he could graduate as a "homeschooler." I applied to college for him as I knew he wouldn't do it. He stayed home and went to our local university, and did graduate, but since then has been completely lost in life and hasn't been able to move forward. That is when I thought something else was wrong and started doing research and realized Aspergers made sense. We went to a psychologist to do a battery of tests and we will get the actual results this Friday. I am hoping this psychologist can help him understand that marriage is not something he should be jumping into at this point. He will not listen to us, and seems to believe everything will magically work out - he has no job! And he needs lots of therapy, I believe. He has severe anger and depression issues, and I am praying we can help him along - I want him to have a decent adult life and I am so worried for him. I do feel alone, like you, and am grateful to see others are here, and we can help each other through these difficult times. xo

Anne - posted on 10/06/2015

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Welcome Lisa and Michelle! I haven't seen many posts lately and am missing the interaction. I'm sure like me, we all feel lonely in trying to figure out the best route in helping our young adult. My son has not been diagnosed, but I have read so much info on Aspergers I truly feel that is what we're dealing with. Some days I doubt myself because he is truly high-functioning, but I feel in my heart that since he hasn't outgrown his struggles and continues on the same path, we are dealing with something more. Because He is my first born, the school year challenges I passed off as childhood, growing-up problems. It was not until college that our life and his blew up, and the realization came that something more was going on. We know our children best, when and what first alerted you that something was not quite right?

Michelle - posted on 10/04/2015

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I would love to join as well. My DS is 22, going on 23, with a degree in History. We will get his results from his psychological testing this week, though I am sure he will be diagnosed with Aspergers. Cannot find a job, cannot figure out what to do with himself. Yet insists he can get married in January to a young lady who also seems to have some issues of her own. She works part time at Starbucks. He doesn't seem to understand how the world works, and how if he has no job, he certainly cannot be getting married. Very frustrating, given he is so intelligent, but can't seem to get his life together.

J - posted on 09/29/2015

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I realize this is circle of moms - I'm a dad,divorced with a 18 yr old aspie son that i have have been caring for by my self for almost 2 yrs. His mother kept him away from me and had enough of him and dropped him off at a friend of mine house, she called me and told me to pick him up from there that she can no longer handle him.

So not only has my son dealt with a rough childhood of school and battling with rage, anger, anxiety, depression, isolated, and bullying now his mother has just abandoned him. 2 years later Im struggling to even "breathe" on a daily basis- he only attended school for 20% of the time last year, and this year he is on track to do the same. His reading is at the 4th grade level, math is at 3rd grade level according to last iep. I have had him enrolled in a county special needs school and ended up sending him to high school with what appeared to have a GREAT ASD program- but that has not worked out at all.
I work many hours because of what damage the divorce has left financially and come home to him staring at the tv. If I ask him to do anything such as his laundry, dishes, vacuum (basic chores) he barricades himself in his room. Thankfully the rage tantrums and attacks are extremly rare and far between anymore. However I find myself really tired of dealing with his daily antics!! He will not do ANYTHING asked of him including going to his therapist or psychiatrist let alone wake up at 8:00 am to go to school.

Really starting to dread coming home and I feel like a prisoner in my home forced to take care of a son that is disrespectful, and lets me know how I treat him like a slave when asked to pick up his dirty dishes.Im outta rope here to tie another knot and just ready to drop him off at a homeless shelter. Its too dang hard to do this alone with nobody to even help or listen to me.

I pray daily for strength and patience because it is all I have!!

Lise - posted on 09/29/2015

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Lucy, exactly! I've gotten to the point where I try not to think about the horrible things he does to me. I try to let them roll off my back. Otherwise I'd be a basket case. You are not alone!!

Lise - posted on 09/29/2015

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Boy, that hit a chord. I'm having some of the same things with my 21 year old. They continue to surprise us, thank goodness!

Lise - posted on 09/29/2015

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Anne, you've got that right! I'll look into setting up a forum for us. Wouldn't it be great if everyone posted what worked and maybe even what didn't? Maybe we'll even work out some good solutions!

Anne - posted on 09/28/2015

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So excited to hear from other moms with similar challenges that love their children and want to help them. It is so difficult seeing them struggle when they are at an age we thought we would be releasing them. I certainly hope that Lise gets back in touch regarding the forum. I am also surprised daily by the strives my almost 21 yr old makes, but also heartbroken by the struggles.

Mkrackley - posted on 09/28/2015

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Lol what's normal? Certainly not my kids. I understand completely the frustration. I can't raise my child even the same as I raise my other children let alone compare to how others raise their 'normal' kids. I'm terrified of my 20 yr old ASer going to work or off to college. Even nervous for him to drive across town. Thing is, he's surprised me many time. I used to be afraid of him driving, turns out he's better than my other kids. I never thought he'd be able to return to normal school and catch up, but he did and honestly I don't understand how. Course, he only lasted a few years before the stress of constant change in high school became too much for him. Point is, he surprises me and I'm hopeful that will continue. I think I realize now,(try real hard to believe) that he'll continue to surprise me. He just needs to do it in his own time and in his own unique way. Patience may pay off. I hope.

Lucy - posted on 09/28/2015

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Hi Our son is currently aged 23 yrs and was diagnosed at age 6 yrs. He also has adhd and various other diagnoses. He can be a complete nightmare if we ever ask him to do something. The most difficult thing is that he looks normal and so most people just assume his behavior is laziness or nastiness. I have been in tears for most of the weekend because of his latest behavior which appears to show us he doesn't care about his family-even though part of me knows that he does love us in his own way it appears very much as though he really doesn't care.
I know what I need to do is to let go of him lovingly and not to try to assist him too much as it always backfires but it is so hard when i see him about to fail- I always seem want to stop him from failing.
Sometimes I would really like to talk to someone who might not judge but who may understand what we as a family are going through. I am too ashamed to tell my friends who have (apparently) very successful and neurotypical children.

Anne - posted on 09/28/2015

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I would love to communicate and share ideas with other moms regarding adult children with Asperger's. I feel alone in trying to weed through what works and what doesn't.

Lise - posted on 09/26/2015

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I think we're all floundering with different issues with our Aspie kids but many similarities. I think because Asperger's was only first described in 1992, there is not much information and we're all floundering in the dark. All the work being done involves early childhood intervention. That's really great as that's when it makes the most difference in a child's life and has the best outcome for a positive prognosis. But of course, it leaves us with adult children and no help.

It seems like it would be great to share what works and get support from other parents dealing with the same types of issues. I have the internet skills to set that up but want to know how many of us there are who would benefit from a forum for parents of adult children with Asperger's. Please let me know.

Mkrackley - posted on 09/24/2015

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Sounds like there are quite a few of us out there struggling with what to do with our now young adult ASers. I would be interested in joining a forum where we can swamp stories, ideas, info on resources, etc. My son is 20. Started taking him for developmental testing when he was 3 and still not talking much. It was the beginning of many years of many different types of doctors testing him for everything from petit mal seizures to schizophrenia. One diagnosis after another ruled out. Leaving us with nowhere to turn and no idea what to do. My mother-in-law found an article about AS and sent it to me when he was about 5. It read like a blueprint of my child. Over the years, there was no question in our minds that this was the root of the issue. However, never once did a doctor, or a therapist, or a teacher, no one ever seemed to want to accept it as a diagnosis. I've heard he is severely learning disabled only to figure out that it was the format of the test that was the problem. It required him to answer verbally which was the whole reason we were there to get him tested! He wasn't talking. Changed the test format to pointing, and he scored above average in every area. It's been years of a frustrating mix of "your son is doomed!" to "Oh wait, he's fine ; we don't want to talk about it." What am I supposed to do with that? In hindsight, I don't think anyone knew much about AS or how to treat it so we were just quietly ignored. Finally at the age of 17, after a few years of just doing our own thing and essentially giving up on a diagnosis, my son asked if I would pursue it again and help him find an answer. He was tested at a developmental center and FINALLY diagnosed with AS. Whew! Now what?!? He's 20, above average IQ, got his GED at 18 (with honors which I didn't even know existed lol) because he couldn't handle being surrounded by people. The stress and anxiety it caused was too much for him. He wants to go to college, but is afraid I think. Wants to be independent but is terrified of interacting with people. I keep looking for some kind of local resource that can maybe help him transition into a job or school. Lord knows, I'm no good at it. Poor guy. I'm a grab the bull by the horns and go kinda person, and I'm at a loss as to how to help him though I desperately want to. I'm afraid I may be incapable. But that's a different post. :) He's super sweet, quiet, and easy to live with. Both myself and his step-father have no problems with him staying with us forever actually (cannot say the same for our other 4 boys lol), but that's not what he wants. He wants to have his own life, and frankly, I don't see any reason why he can't. He just needs help in ways that I can't help him. Would love to share ideas ...

Lise - posted on 09/23/2015

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Is anyone interested in setting up a forum for parents of adult children with Asperger's? I just found this section but there doesn't seem to be too much activity.

Catherinecamp4 - posted on 08/10/2015

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Hi im a mum with aspergers I was disgnosed age 47 ....would this be passed onto my daughter who show signs

Gayle - posted on 07/13/2015

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My son is 24,has his associates degree,works as a cashier at Kohls cause he has no clue what he wants to do,This is not unusual I know,but while he is good at his job,he is socially awkward,has trouble making new friends,wont look one in the eye,only plays video games when not working.Is afraid to drive,or take on anything new,Everyone thinks he is just behind socially,or not developing the "normal" way,but I think he has aspergers! He does things alone a lot,prefers it I think,tho he has a girlfriend he doesn't see her much.Not much empathy,no direction.My husband worries about him having to get a full time job with insurance in another year or so,but he (our son) worries about getting another job as he is comfortable in this one,which is only part time.Others his age on on their own,some starting families and he hasn't progressed much socially since high school!,No new friends,same ones since his school days,, Does this sound like aspergers??Help!

Karol - posted on 07/08/2015

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You could be speaking about my son. We had an understanding that he would go to Vocational Rehab and sign up for college again. I am on disability and that's what I am doing. He went at a later time. He came home with a story that there is a waiting list. I believe in the waiting list but I think that he has lied to me once again. He probably found out about the waiting list and didn't turn in the paperwork because I don't think he wants to do anything other than what he is doing. Which is sleep all day, video games at night and eat. I have to beg him to shower and clean his room. His only friends are who is in his "guild" on the internet. Now I have found his bank statements showing all kinds of weird charges. He is "buying" his friends on the internet. He can't afford to buy me a mother's day card but he can sure send someone $150 Western Union. He states that he recognizes scammers and that he isn't naive. eeh yeah right. He buys things on Amazon and they sure as hell don't come here. He receives SSI/SSDI (had a job at blockbuster for a while) and I am the representative payee on his account. For his therapy, he has to have an independent living program which included taking care of his finances so he had a debit/Mastercard. Problem with that is that as representative payee, I have to fill out a form for SSA every year to state where and how the money they are giving him is used. He's sending it to other people, buying things for other people!! people he knows jack about. I could be held financially and legally responsible for misuse of funds!!! i told him this and he states he knows. This means to me that he could care less about throwing ME under the bus. I am DONE. He needs to go to supportive living somewhere. I need to let him understand that I am not going to live forever and if he continues to do this, HE will face the consequences. Better to learn now than at age 40 I guess.

Jo - posted on 05/27/2015

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To parents in Minnesota: great experience we just had at Fraser Center for ASD in Minneapolis. We had to wait over 6 months for an evaluation appointment, but they do a good job. Had my 27yo evaluated- he is on the spectrum(see two previous posts below). They have set him up with 3 helpful things: 1) a vocational/interest program that will guide him in figuring out what he would like to do as far as a job or further schooling 2) a therapist who is trained specifically to work with ASD clients 3) a young adult therapy/support group to deal with social issues. Yes, yes, yes!10/18/15 update: Well, Fraser Center promised a lot, but didn't actually deliver. Turns out the social groups were all for younger children, the vocational/interest program simply referred him to the state job- finding program, and he wasn't interested in meeting with another therapist. But he has gone out and found another job on his own, so all the investigating and talking spurred him on. My heart is with all of you parents who are struggling so. It's a nebulous disorder: so very difficult to put your finger on what exactly the problem is, and trying to help is like hitting your head against a wall(over and over for years). Sometimes all you can do as a parent is to love, love, love your child.

Jo - posted on 05/26/2015

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To continue:Currently, my son is not working.Sleeps all day, video games all night.Has never had a date. Worries he will be all alone when his Dad and I die. Will not do anything that is suggested, or eat what I've prepared for dinner. No empathy ever for me. Doesn't respond when family dog brings him the frisbee. Read early but won't read now. Had job delivering pizza for 2 1/2 years (!), but quit due to social problems with no notice, now won't look for another. Has quirks like having to brush his teeth at the kitchen sink, always keeps a small object with him like a little car or a jackknife. Forgets to take his meds (for ADD and depression). Still needs parents to make dentist and doctor appts. Good at poker (poker face extraordinaire). Would steal money from us when younger, never tried to cover it up-"I needed it". Good looking- I once mentioned that a girl was 'checking him out' but he said he had no idea what that was or meant. What's to become of him? has been my constant worry. He does have some strong points- he is lucky enough to have childhood friends who have kept him in their circle even though they have all graduated from college and are married or have girlfriends. He plays video games with them and poker. He is not good at hygiene but not awful. Messy but not destructive. Drinks, smokes cigarettes and pot, but eats well and takes his gummy vitamins. And I saved my money when I was working, have bought him a townhouse, and will set up a trust that will pay all bills and let him live modestly. He can drive and is excellent knowing directions(but never put a puzzle together when young). So, I guess we are lucky compared to some. But he is my darling baby boy who will never experience love in the way that most can, and that breaks my heart.

Jo - posted on 05/26/2015

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OK, get this: I'm 65, RN for 30 years, searching for an answer to my 27yo son's difficulties since preschool, just found this column and now have an answer! Leave it up to moms to correctly delineate typical behaviors. The experts we've gone to, the therapy he has had, the money we've spent- the troubles we've had!!! Lordy.
Here you go: bright,trouble in school,tried community college x2 and quit quickly x2. Never wanted to do what I told him. No begging, bribing,consequencing,demonstration of me losing my mind, made any difference.Rarely did the "work" in school, always knew answers on tests. Had to get GED because of missing credits and poor attendance and dismal grades, but got a 22 on his ACT. Always sleep problems: too little when young, too much as adult. Doesn't get sarcasm. Major tune-out if confronted-he will lay motionless,mute, with eyes closed.

Melinda - posted on 05/17/2015

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Oh my Gosh. I live in Melbourne and my Aspie
son is 16. He will not go to school, the high school have bent over backwards but if he isn't there there is no point. I'm thinking a pension is the way to go, I'm a single mum who works full time but thinking I'll have to quit to care for him. I'm glad I'm not alone, friends and family are never going to understand :(

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