Feeling helpless; Mother of 18 year old son with Asperger's

Stacey - posted on 01/26/2011 ( 27 moms have responded )

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Our son was diagnosed 3 years ago with Aspergers. He is 18 years old extremely bright but has zero friends. His family is his entire world. We have been to doctors, psychiatrists, Children's hospitals, psychologists, therapy groups and he takes medication. etc. He becomes more depressed as he gets older. I am at the end of the rope on how to help him. It is breaking my heart. Please, please can someone give me advice? I will take any and all feedback at this point. Thank you.

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Diane - posted on 02/09/2011

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Have you found GRASP?

GRASP – The Global and Regional Asperger Syndrome Partnership. This is an educational and advocacy organization serving individuals on the Autism spectrum. URL - http://grasp.org/
Have heard they have Support Meetings all over geared towards young adults and up. Check out their website. Lots of helpful links and info for adults with Asperger's.

Jen - posted on 02/02/2011

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I would recommend looking into Gutstein's RDI therapy. It's all about relationships. Here's a synopsis that might be helpful. http://autism.about.com/od/treatmentopti...

RDI really helped my husband and I become better parents to our little girl. It helped her show us her sense of humor, and she now has a few kids who like to share recess with her. I'm not sure these are "friends" as such. But she's 9 years old, and I think we're on the right track... Good luck. And anti-depressants are a wonderful thing.

[deleted account]

Hello again Stacey, Have you told your son that he is a gift from God and that though he feels alone and sometimes afraid that there are many others out there that are just like him. There are the Asperger's/HFA websites Aspies for Freedom and Wrong Planet where he can read or participate in numerous forums and discussions.Some are serious others just plain fun and games. Also we have a wonderful resource here the Autism Society of NC Bookstore http://www.autismbookstore.com/Merchant2... there are many materials for young adults and adolescents as well as parents you will find helpful. Because we are always trying to save $$ I did my research there to find the books I believed to be useful and then I either requested them from the library or ordered them from Amazon or Barnes and Noble at a discount. There is one more blog site I love, it is on Psychology Today's web-site. It is written by a young women called Aspergirl she is insightful and funny here is the link
http://www.psychologytoday.com/blog/aspe... I hope these suggestions help. One more thing, the instructor from Nate's Social Learning class said that finding a mentor for 1:1 sessions really works great for many of her Asperger's kids. The way she explains it is that HFA/AS makes it very difficult for those who have it to discern another persons motivations and sincerity so it is all about building a level of trust so they can relax and feel comfortable in expressing themselves. Personally, I couldn't agree more from our experience. Patience, perseverance, and faith, that good can always come from adversity is the key.
Prayers and well wishes,LeeAnn

LeeAnn - posted on 01/27/2011

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Hi Stacy -I am sorry you are struggling at this time. Our son was diagnosed with HFA/Aspergers last spring at the age of 19 after everything fell apart when he went off to university. He suffered with ever increasing depression in high school I think due to the fact he could see the writing on the wall so to speak with being able to "fit in" in college. Also, though as a youngster he was oblivious to having relationships with others as he matured he came to actually want relationships but had no idea how to cultivate them. He has an online community of gaming friends that help him to not feel isolated and has begun an online writing course with UWMadison.
I felt much as you do several months ago but have come to accept that the NT idea of happiness is contrary to what HFA/AS happiness is. All of mine and Nate's medical psychiatric advisers have changed my expectations. They insist that first and foremost is Nate's happiness -so if you were like us and had negative influences from relatives or friends you need to educate them or ignore them. Nate's anxiety moderated completely just being home this last year and his depression is mainly just a dark cloud of uncertainty. He steadfastly refuses any meds and his doc said he will not coerce him. You may want to review your son's meds maybe they need to be tweaked or changed -I know my sister who has had every diagnosis under the sun but Autism (which actually fits) has had a roller coaster of a ride with her meds. It sometimes takes a few trial and errors to get the right dose etc. so definitely talk to your doc. Are all your medical professionals well educated in treating ASDs? It is worth it to find those who are in my experience. I think it helped here to emphasize to Nate that we were going to be patient, that there would be no pressure on him to make certain choices, and that we would respect him whatever he chooses. We reassured him that we would do our best to facilitate and support his choices come what may. I know the pain of watching the ones you love suffer and not knowing what to do to help -my heart goes out to you. God Bless

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Sheri - posted on 10/04/2011

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You sound like me. My son is 15 (16 in December). He is very lonely and also has our family as his only friend. I don't have the answers, but where do you live? I am in Brooklyn, NY.

Connie - posted on 10/04/2011

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This is my first post ever so everyone thanks for help and patience for computer deficit. My son is 19 and had all kinds of dx and the closest one has been aspbergers. O ur focus was always to "just get him thru school" which has been accomplished and it's now like we are at a stand still. I wish now I had not put such an emphasis on school and instead spent my energy on daily living skills. His diploma will never make a difference in his life. I guess I am doing the opposite of helping you as I am currently in a total defeated place. I did want to tell you I care and empathize. I wish I had advice to offer for you.

Lisa - posted on 02/10/2011

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Also, I called an Autism center here in my area and they have an 8 month waiting list, great help huh? I do worry about suicidal thoughts sometimes. He begged me for someone to talk to.

Lisa - posted on 02/10/2011

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Stacey,
I feel your pain! My son Joshua will be 18 in April. He was diagnosed with Aspergers Syndrome in 2002. I see him becoming increasingly depressed. I lost him into the 360 video game with a head set behind a locked door. His family is not even important to him anymore. He feels he excels on this game system and he feels he has lots of friends. He tells me that he is “emo” and “evil”, he doesn’t even know what these things mean. My son is the sweetest, kindest young man that I know and a wonderful student. He just informed me that he asked two girls to date him this past month and they both shot him down and he doesn’t know why.
I just filled out paperwork to enroll him into a community college in the fall after graduation, I am praying to God that this will be a slow transition into adulthood. I am very scared.

MiChele - posted on 02/09/2011

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I wish I could but sadly my 22 yr old is lonely as well. If I did not go out of my way to include him he would not be included in family activites by extended family as he does not drive. It breaks my heart too and I also would love some effective guidance. I sympathize

Eva - posted on 02/09/2011

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Hello Stacey,

Depression seems to be never ending with these children and I am happy to hear though that his family is his everything, be thankful for that. My daughter seems always disgusted with my presence, she will not speak to me, go places willingly with me, allow me to touch her or anything of the such. Now I am dealing with self mutilation and even more depression. My heart is crushed as is yours. I am sorry for our children's troubles. Did you try a big brother with him? Some sort of mentor?

Roberta - posted on 02/08/2011

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Does your son like to help people? If he feels good when he feels needed, maybe you could get him to volunteer some of his time to something and this could be the tool to helping him out of his depression and feeling a productive part of society. My son is only 9 1/2 and feels so awful that only the adults are allowed to volunteer. He wants to help too. It is hard with him also because he, too, has Aspergers and in this case he feels unappreciated BECAUSE he can't volunteer.

Suzanne - posted on 02/08/2011

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Stacey all of the above mentioned are great ideas. I know my brother(who is an aspie) didn't really make any good friends till he was 20. Those he met through a local aspie support group. He has also found a couple of them through RDI. I would reccomend checking out RDI, one of it's focuses is developing relationships. Especially since Dr Gutstein, the guy who developed it, is located in Houston.

Heather Fraser - posted on 02/07/2011

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hello. My son is 18 as well and was diagnosed with Aspbergers at the age of 15 as well. It was difficult cause since he was in grade 3 I knew something was off but no one would listen to me. He has no friends really, and joins in nothing at school. I understand. I just moved him from the small town we were in to a larger one to get more of an education for him. The town were were in did nothing for him. There was no help medical wise. Now even though he really still has no friends he is med free, going to school full time and is main streamed. That is something I never thought would happen. My son Beau has found some things he really enjoys and I am trying to encourage this as it is getting him in with other students. Is there anything Your some really likes? Something he can focus on . My email is hdocherty1@hotmail.com. and I am on face book too. Heather A Fraser

Amy - posted on 02/07/2011

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I am slow to get on these conversations... but I have a 20 year old son who struggled with the same issues. I found something that helped. His Teacher and I am amazed!!! He has been off his meds now for 6 months (with Dr's approval) and he is a completely different "social person" than he was. I don't get on here very often to follow things, so email me directly at ceoAmy@gmail.com and I will (and have his transitional teacher, if you like) testify as to what I have found that helped my son! It has changed our lives! Amy

Marella - posted on 02/02/2011

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I can totally relate. My son was diagnosed when he was 13 years hold and things have been going downhill since then. He is now 15. He tries so hard to fit in with his peers and yet the take advantage of him. He will sacrifice anything for friends. He is very often depressed is is on medication for that in addition to seeing doctors and therapists regularly. The thing that makes it even more complicated is now he is dealing with substance abuse. I am going crazy and like my family is falling apart. Despite my son been extremely bright, he is failing most of his classes and is often in trouble. I am in the process trying to find him a more structures special education program because the current environment is not working for him. I don't know what I am going to do.

I appreciate all the posts I have read here. I know that I am not the only one in the world dealing with these issues though I often feel like it.

Jeanne - posted on 02/02/2011

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Have you been to Aspies of Houston? I have some contacts there. I have 2 kids on the spectrum, and I am a teacher of Aspies for a local ISD.

Sharon - posted on 02/02/2011

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Hi Stacey, I can't give you any advice as each child with Aspergers is so different but here is how we have coped. My son, who is now 20 years old, was only diagnosed at age 16. We as parents had refused to believe he was any different to his brother and sister (both older than him and now married with children of their own) so we never got help or advise from anyone. He actually asked for help just before his 16th birthday. It was quite an emotional time for us once he was diagnosed but we decided to continue treating him just like we always had. Yes, he is a lot quieter than his siblings and doesn't have friends apart from his family but he is such a loving child though only towards me and I even ask him if I can hug him and don't just hug him without his permission He can display frustration and in that time I leave him alone to work out what is bothering him. When I have tried to find out he has become a bit aggresive verbally but this has not happened in sometime now. He also has temporal lobe epilepsy and is on medication for this.I too worry when he is quieter than normal as depression could be a facter but thank goodness so far he has not shown signs of depression. He matriculated end of 2009 with a university pass. Both my husband and I have realised he may never be in a long term relationship or even leave home for many years but we take it one day at a time. It was a miracle he graduated and each day is a blessing to have him with us. Regards, Sharon

Sylvia - posted on 02/02/2011

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Hi my 17 year old son Alex has HFA and he is has found the you tube community helpful, he has posted a number of videos on how autism affects him, your son might find it helpful too. If you type sitheis2009 into you tube you will find his account. Alex has come to terms with having autism through talking to others who have the same difficulties.

Diane - posted on 02/01/2011

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I have a 13 year old son who struggles with these same issues. We are fortunate to have an excellent school system that has a program designed to meet our kids needs. He is able to start his day in the sensory room and it helps him to regulate his nervous system before classes start. He is a kind hearted boy with a 0-60 mood change that he is learning to control with help from therapists and predictable scheduling at school and at home. The friend issue is very hard because our kids often have tease me written on their foreheads. We too have constantly told him that he is a gift from God, that his life will have many changes and roads. We also have picked a peer group for him by involving him in church activities and a very small boy scout troop. We have used a lot of social stories to help him navigate the school environment. He is very visiual and even though he is quite a talker he does not hear a lot of what is said so visual cues have helped him..I pray that sometime in the future God will bless him with a very special friend and he will not go through life with this feeling of loneliness. we also introduced him to wrong planet! God bless you ...

Sarah - posted on 01/28/2011

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My 14 yr old son has been struggling in year 10 at school, but has made some friends, but asked me the other day for a self-esteem pill, soooo sad, he is handsome, very capable and intelligent, a fantastic drummer etc, and has a family that love him so much, you wouldn,t think he needed a pill. :(

Sheri - posted on 01/27/2011

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I don't know where you live, but there is a group in New York City for adults and young adults with Aspergers. My son just turned 15 and his friends also consist mainly of family members. He is too young for Grasp but maybe your son isn't The group was started by a man who has an adult son with Aspergers. I'm not sure but I think the website is GRASP.org.
Hope it helps!
Sheri

Stacey - posted on 01/27/2011

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For some reason I am unable to reply to each person but wanted to thank all of you for your feedback/reply. We live in Houston Texas. LeeAnn, sounds EXACTLY like our son. He is paranoid about his future. Thinks we dispise him and are going to kick him out. It is heart wrenching. He always asks, "Mom, why is God punishing me?" How can I answer that? He had friends through his f8th grade year but HS has been very rough. He failed 9th grade so is a year behind but now he is making straight A's. I appreciate your taking the time to tell me your story. It certainly helps. God bless.

Misty - posted on 01/27/2011

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structure and try to keep a steady routine. my 16 year old has aspergers along with bipolar and adhd...same story no friends, family has limited patience cause they dont understand, and she gets irate quickly. worst part is that she also has a nasty and controlling personality per her doctors and therapists. wish you the best of luck

Katherine - posted on 01/26/2011

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Where do you live? Are there any centers or groups he can become a part of with like minded adults? I know here in Michigan we have drop-in centers and support groups, meet-up groups and so forth. I might be able to help if you tell me where you live. Just city and state.

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