deafness with autism spectrum

#1
Hello, I have a 22year old deaf son who is also on the autism spectrum, high functioning but with a lot of denial and unrealistic expectations of his future.
Normally I would stay out of adult children's lives, but he is so miserable not quite fitting in with the deaf or the autism communities. He wants to have
friends and a girlfriend just like anyone else his age. He is into anime and travel. Does anyone have any suggestions about meet-ups, deaf anime fan
groups, or other social groups I could point him to? He signs but is not oral. Thank you for reading
 

Muse

Active Member
#2
Where are you roughly located? Some parts of the US (I'm assuming you're from there) are total hotbeds of social activity for the Deaf world, but many places aren't. How does he feel comfortable interacting online with like-minded folk?

I'm not familiar with autism in experience, but I'd be happy to chip in what I can.

Another thing: autistic children often have many gifts, but we collectively try to "normalize" them and teach them to be normal, often at cost to them. This same phenomenon happens with Deaf people of all types. Could this be a dynamic? Autistic people can do amazing things I can't even begin to fathom, and I imagine that racking up wins with his gifts could go a long way with his self-esteem.
 
#3
Thank you, Muse, I totally agree with not attempting to make people on the spectrum into neurotypicals. Their thinking is hard-wired and and an integral part of their humanity. As a matter of fact, a cultural movement for Asperger/autistic people, modeled somewhat the concept of Deaf culture, exists now. My son draws very well (his gift, I suppose), but that's not too important to him. He wants to live in a nice house in Seattle,
with a wife and kids--an achievable goal, but probably not for someone who reads at a first grade level, can't speak or read lips, and who wants to work as a stock clerk in a supermarket. I should mention we live in the NYC area, and he wants me to move to the west coast with him, where everyone will live happy ever after, and never die. You get this from 4 year olds normally.

You get the idea that his peer group is very narrow. He doesn't accept autism, only identifies as Deaf--not too many girls out there for him, from what I can see. And just to add to the complications, he has a Deaf twin brother who is fine--away at college, drives a car, has tons of friends,
maybe even a girlfriend up in Rochester (who knows, as I said, I try to give my kids some space.) It's been a weird dynamic, for sure.
 
#4
Gosh, firstdaughter. You view your son with clear eyes in some ways. Are there any autism support groups for parents of adult children available to you? The challenge you face is a tough one. Hugs.
 

Barbaro

Well-Known Member
#5
Hey, I'm a deaf mom of hearing son with ASD. Is your son under your insurance? Is there a program in NYC area where they teach adults with ASD/Asperger to be independent? My brother's nephew with Asperger graduated high school last year. He is in the program learning to be an independent. My stepniece is autistic and loves to go to anime/ comic conventions. However, if your son can afford to go to comic conventions, then it's great. He can get inspiration there.

Does he carry conversation well with Deaf/HH people ? Is he comfortable with eye contact? Eye contact is so vital to the Deaf/HH community.
 
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deafdyke

Well-Known Member
#6
Is he on a "severe Asperger's syndrome level?" This is tough....Most "grey area" programming is targeted towards hearing kids.....Wish I knew of Deaf specific postseconday programming.
 
#7
Hi, i am deaf/hoh and on the spectrum myself. I’m a 46 year old adult that has never needing supports in work/community, but socially, being deaf and autistic I am quite impaired.

Also, I have taught special ed for 24 years and the last 19 specifically with high school high functioning autistic students.

I’ve been through attempts at having so called normal relationships as you describe your son desires. You won’t change his mind, he will need to learn about his own strengths and weaknesses through real life experience and come to his own decisions regarding his social circle.

In my program, I work to help young people understand themselves in terms of their strengths and weaknesses. It is a tremendously difficult thing for young people on the spectrum to master. Be patient with him and support the process the best you can.

If you are able to find a therapist who specializes in autism, some are through hospitals with ASD programs, that may be a source of support for him.

I would also recommend a self help, workbook if he’s willing to access. Living Well on the Spectrum is the title....I can add the author later.
 
#8
Gosh, firstdaughter. You view your son with clear eyes in some ways. Are there any autism support groups for parents of adult children available to you? The challenge you face is a tough one. Hugs.
Thank you for your kind words. (I try not to let denial rule me!). There are support groups for autism families; the deafness and denial of being
autistic keeps my son--and myself--apart from them.
 
#9
Hey, I'm a deaf mom of hearing son with ASD. Is your son under your insurance? Is there a program in NYC area where they teach adults with ASD/Asperger to be independent? My brother's nephew with Asperger graduated high school last year. He is in the program learning to be an independent. My stepniece is autistic and loves to go to anime/ comic conventions. However, if your son can afford to go to comic conventions, then it's great. He can get inspiration there.

Does he carry conversation well with Deaf/HH people ? Is he comfortable with eye contact? Eye contact is so vital to the Deaf/HH community.
Hi, so you're living a multi-faceted life as well! There are many programs for adults with ASD in my area. The problem is the signing, and my son's lack of insight into his limitations. He only identifies as Deaf. He's in a program for Deaf adults with developmental delays; he hates the program and will have nothing to do with any of his peers in the program. We are all working on his skills for independence. He makes great eye contact, fortunately. I'm not sure how he comes across to neurotypical Deaf people, since he rarely meets any. I suppose they would pick up on the fact that there is something different about him.
 
#10
Hi, i am deaf/hoh and on the spectrum myself. I’m a 46 year old adult that has never needing supports in work/community, but socially, being deaf and autistic I am quite impaired.

Also, I have taught special ed for 24 years and the last 19 specifically with high school high functioning autistic students.

I’ve been through attempts at having so called normal relationships as you describe your son desires. You won’t change his mind, he will need to learn about his own strengths and weaknesses through real life experience and come to his own decisions regarding his social circle.

In my program, I work to help young people understand themselves in terms of their strengths and weaknesses. It is a tremendously difficult thing for young people on the spectrum to master. Be patient with him and support the process the best you can.

If you are able to find a therapist who specializes in autism, some are through hospitals with ASD programs, that may be a source of support for him.

I would also recommend a self help, workbook if he’s willing to access. Living Well on the Spectrum is the title....I can add the author later.
Miki, I can well understand how socially isolating the combination of Deafness and ASD can be. You are obviously intelligent and educated, independent of course. I could only wish my son could approach your successes, but probably not with a tested IQ of 77! At this point, I feel he is like 14 years old emotionally (with some 6 year old thrown in), and I just am gritting my teeth and hoping in the next few years he will allow himself into an appropriate social circle as you say. He may have to learn gradually to lower his expectations. I would love to see the workbook, also.

He is seeing a therapist who is teaching him some breathing exercises to deal with frustration. But I find it poignant, to read that you, with all of your accomplishments and education, are still feeling socially impaired.
 
#11
Is he on a "severe Asperger's syndrome level?" This is tough....Most "grey area" programming is targeted towards hearing kids.....Wish I knew of Deaf specific postseconday programming.
Hi! I guess, to answer to your question, he's not severely autistic, but probably not super high functioning. A grey area, indeed. He's very immature and has unrealistic goals for his life and little insight into his limitations. (Not to repeat previous posts). He draws very well and reads newspaper travel sections and everybody's travel blog. He thinks he can travel all over the world. He's also the only one of my 3 kids who has expressed an interest in getting married and having children! Little chance of that! I feel so sorry about the disappointments he's going to face, but somehow a little part of me believes that he could find someone who is Deaf, and also a little different. Thank you for your kind interest.
 

Barbaro

Well-Known Member
#12
Hi, so you're living a multi-faceted life as well! There are many programs for adults with ASD in my area. The problem is the signing, and my son's lack of insight into his limitations. He only identifies as Deaf. He's in a program for Deaf adults with developmental delays; he hates the program and will have nothing to do with any of his peers in the program. We are all working on his skills for independence. He makes great eye contact, fortunately. I'm not sure how he comes across to neurotypical Deaf people, since he rarely meets any. I suppose they would pick up on the fact that there is something different about him.
Did he say why he wants nothing to do with his peers? Is it because of peers' development delays, not deafness?

A long while ago, I met Deaf/Autistic at a college. I guess it was probably the last time I met Deaf/Autistic at a college. It was difficult to carry conversation with him. He'd rather to talk about his favorite subjects, nothing else. He is not interested in knowing me and others or listening to us talking about mundane subjects. I had to be blunt to him by getting him to stay on topic. He has a bit of anger outbursts. He is not violent. He is gentle and nice. I think it takes a special direct/patient person to guide him properly. Miki23 is correct he has to learn life lessons on his own. Maybe there is a way to teach him to talk and ask questions properly?

I don't know if you're familiar with Nemechek protocol. I currently am reading Dr.Nemechek's book. He is an internal medicine doctor, and an AIDS/HIV researcher. He has a private practice in Arizona. He works with patients with ASD, ADHD, TBI, PTSD, concussions etc. It's kinda controversial. As you know, many autistics in the community are on probiotic supplements. However, Dr. Nemechek strongly opposes probiotic supplements and vitamin supplements, because 80% of vitamin supplements, including probitics are fraudulent and can damage the gut. He said there are only three ingredients all autistics and others with development delays and seizures need to consume : high quality fish oils omega 3, inulin and California Olive Oil (Omega 9). It sounds so simple, right? I thought he was crazy, but there are over 10,000 followers in the Nemechek Protocol support group on Facebook now can confirm it. I haven't given inulin to my son yet, but he recently consumes omega-3 fish oils and California Olive Oil. It made a huge difference to my son. He learns to sit and chill out instead of throwing crying outbursts. He is able to tolerate people now. Dr. Nemechek also said that small children heal faster on protocal than adults. For instance, his 23 years old nonverbal patient had never made an eye contact nor wrote her own name. It took 8-9 months for her to start talking in English and Spanish.

Thought you just want to know.
 
#13
Thank you, I have heard of Dr. Nemechek. I haven't tried any dietary protocols with my son because he does not have seizures or crying outbursts. He does get very angry and frustrated if you try to clue him into reality (no, you're probably not going to be able to afford a house in the suburbs of Seattle, etc.), or if he compares himself to his normally functioning Deaf twin brother. He sounds similar to the person you met in college. He disdains the older people in his program who have CP, MR, many in wheelchairs; but less understandably, there are younger people who seem to be functioning at about his level, whom he also shuns. He only identifies as Deaf. The denial and unrealistic life goals are what I'm dealing with right now. I recall giving both boys fish oil at one time, mostly for the cholesterol lowering effect, since my husband fed them a lot of meat when I was working! I wonder if it would have any effect on his childish life expectations. Or, as has been pointed out in this forum, reality may have to sink in slowly. May I inquire as to how old is your son, and how long it took for you to notice the changes in behavior? Thank you again.
 

Barbaro

Well-Known Member
#14
Thank you, I have heard of Dr. Nemechek. I haven't tried any dietary protocols with my son because he does not have seizures or crying outbursts. He does get very angry and frustrated if you try to clue him into reality (no, you're probably not going to be able to afford a house in the suburbs of Seattle, etc.), or if he compares himself to his normally functioning Deaf twin brother. He sounds similar to the person you met in college. He disdains the older people in his program who have CP, MR, many in wheelchairs; but less understandably, there are younger people who seem to be functioning at about his level, whom he also shuns. He only identifies as Deaf. The denial and unrealistic life goals are what I'm dealing with right now. I recall giving both boys fish oil at one time, mostly for the cholesterol lowering effect, since my husband fed them a lot of meat when I was working! I wonder if it would have any effect on his childish life expectations. Or, as has been pointed out in this forum, reality may have to sink in slowly. May I inquire as to how old is your son, and how long it took for you to notice the changes in behavior? Thank you again.
Are your son and his brother close? Is it possible you could ask his brother to find out information about Deaf/Autistic group at NTID in Rochester, NY? There is a large deaf community there. Someone there must know information.

Sure. My pre-verbal son will be 3 years old in a few months. He used to get comments since his birth that he always looks serious. I had a short labor. I didn't even ask to be induced, but they gave it to me anyway. They claimed they did this because it was supposed to help me speed up. Why speed up when I was doing so well? It doesn't make any sense. My son came out purple. It turned out to be a low oxygen. He was in NICU for a few days and then came home with us.

His situation is a bit different. He started to sleep all night for the first time when he was almost 6 months old. Many babies and children with ASD have trouble getting sleep, but we never had any problem. He only woke up crying and teething in the middle of nights. That's all. He never points a finger, but he points with my hand or any adult's. He is a natural observant and loves to listen to music. He can babble, laugh, and smile. ASL is his first language. He likes to touch on any texture surface with his fingers.

He used to be on Vayarin for over half a year. No insurance covers it. It cost us over $67 a month. Vayarin contains (EPA and DHA) fish oils and phosphatidylserine, but it helped him very little. We think EPA and DHA in Vayarin are too low. I read a post on autism forum a father stopped purchasing Vayarin and bought separate photsphatidylserine and fish oils directly. He swore it helped his son. He claims Vayarin is a marketing deception. We stopped it and switched it to high quality fish oils. He currently is on Nordic Natural Omega-3 fish oil 600 mg. He used to be on Nordic Natural 3-6-9 fish oils, but it made him sleepy. I read that it works for children. I guess, everyone is different.

We started IQed Smart Nutrition powder and NN Omega-3 fish oil two weeks ago. He was on it on and off because he just recovered from bronchitis. I learned that when children with ASD become sick, they regress. But we noticed he becomes more spontaneous, his eye contact is increased, he cries less, and he starts to initiate games with us. He used to rub his head against the wall all the time, but it is decreasing now. We sent him to a private school last Fall, but it didn't go well and we had to pull him out and sent him to ABA therapy instead. At first, he hated to go to ABA center. He was literally screaming and crying. Well, not anymore. He is excited and looks forward to attending ABA therapy. Last Wednesday, while we were in the waiting room for a therapist to come and pick him up, he sat on the couch with me waiting and kept looking at the door. He got bored, and he started to play and pull velcro straps on his shoes. That is the first time. He used to pace around all the time in the waiting room. We made changes to his diet by reducing omega-6. Meat is fine as long as it is grass-fed. He is fed with goat/sheep yogurts. He avoids processed food, crackers and cow dairy except Kefir. We are working on him learning to point a finger instead of using my hand or someone's hand now.
 
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#15
Are your son and his brother close? Is it possible you could ask his brother to find out information about Deaf/Autistic group at NTID in Rochester, NY? There is a large deaf community there. Someone there must know information.

Sure. My pre-verbal son will be 3 years old in a few months. He used to get comments since his birth that he always looks serious. I had a short labor. I didn't even ask to be induced, but they gave it to me anyway. They claimed they did this because it was supposed to help me speed up. Why speed up when I was doing so well? It doesn't make any sense. My son came out purple. It turned out to be a low oxygen. He was in NICU for a few days and then came home with us.

His situation is a bit different. He started to sleep all night for the first time when he was almost 6 months old. Many babies and children with ASD have trouble getting sleep, but we never had any problem. He only woke up crying and teething in the middle of nights. That's all. He never points a finger, but he points with my hand or any adult's. He is a natural observant and loves to listen to music. He can babble, laugh, and smile. ASL is his first language. He likes to touch on any texture surface with his fingers.

He used to be on Vayarin for over half a year. No insurance covers it. It cost us over $67 a month. Vayarin contains (EPA and DHA) fish oils and phosphatidylserine, but it helped him very little. We think EPA and DHA in Vayarin are too low. I read a post on autism forum a father stopped purchasing Vayarin and bought separate photsphatidylserine and fish oils directly. He swore it helped his son. He claims Vayarin is a marketing deception. We stopped it and switched it to high quality fish oils. He currently is on Nordic Natural Omega-3 fish oil 600 mg. He used to be on Nordic Natural 3-6-9 fish oils, but it made him sleepy. I read that it works for children. I guess, everyone is different.

We started IQed Smart Nutrition powder and NN Omega-3 fish oil two weeks ago. He was on it on and off because he just recovered from bronchitis. I learned that when children with ASD become sick, they regress. But we noticed he becomes more spontaneous, his eye contact is increased, he cries less, and he starts to initiate games with us. He used to rub his head against the wall all the time, but it is decreasing now. We sent him to a private school last Fall, but it didn't go well and we had to pull him out and sent him to ABA therapy instead. At first, he hated to go to ABA center. He was literally screaming and crying. Well, not anymore. He is excited and looks forward to attending ABA therapy. Last Wednesday, while we were in the waiting room for a therapist to come and pick him up, he sat on the couch with me waiting and kept looking at the door. He got bored, and he started to play and pull velcro straps on his shoes. That is the first time. He used to pace around all the time in the waiting room. We made changes to his diet by reducing omega-6. Meat is fine as long as it is grass-fed. He is fed with goat/sheep yogurts. He avoids processed food, crackers and cow dairy except Kefir. We are working on him learning to point a finger instead of using my hand or someone's hand now.
I note that you say your son's first language is ASL; if he is using language of any type that is very encouraging. From what I have seen, early and intensive intervention is the key to optimum functioning in the future. The brain of a young child is wide open and adaptable--as you can see with your son's eventual acceptance of ABA therapy. And as you say, every child is different. What works beautifully for one kid has no effect on another. I've seen 2 kids, both with a diagnosis of PDD, sent to the same school in NYC. One parent said, this is a great school for her, such a good fit; the other pulled her son out of the school and said he's doing terribly here, it's not working. Even typically developing kids don't follow your expectations, right?! Keep up the good work. I'm not a particularly cheerful person, but I found that the small things (the smiles, the incremental milestones) were very encouraging.

Regarding Rochester, my son's twin knows an interpreter whose brother is autistic and in a group home in Rochester. It was very nice of my other son to help, but just autistic and not deaf would be immediately rejected! I would love to explore Rochester, with its Deaf community as a place for my autistic son to settle, (and myself, too, in my retirement)--but first he's got to get over his obsession with Seattle. He's locked into that place and into all the other fantasies he has--a Deaf wife, 2 Deaf kids, a house--and his parents (who will live forever) with him. This is someone who can't arrange to get a haircut by himself....
 
#16
I am Deaf blind and have asperger syndrome. I am bisexual and single. I would like my partner to be vegan so I guess I will stay single. There is nothing wrong with that.

I guess your son is a lot more severely affected then me. I wish you luck getting help for him.
 
#17
I am Deaf blind and have asperger syndrome. I am bisexual and single. I would like my partner to be vegan so I guess I will stay single. There is nothing wrong with that.

I guess your son is a lot more severely affected then me. I wish you luck getting help for him.
Thank you for your wishes. You are certainly ahead of my son in many ways. Good luck to you--there are more and more vegans out there all the time.
 

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