Much Worse than I Anticipated

[tinktronik]

Hey all. Been a while for some of you (hi crew) and hi to all you 'shakers I haven't yet met. I got some news this week that has been so long coming. Answers I have been looking for for years, and the answer is much more profound and confusing than I could have seen coming.

 

For 12 years now my boyfriend has been a mystery wrapped in a riddle. He is the most dry humored, smartest, logically thinking, irrational, rational, distracted man I have ever known. His behavior in our relationship however has been confusing and confounding and over the years frankly bizarre.

 

He's had 2 admissions to psych facilities since we've been together, then rebounded in a number of days and landed high level jobs making over 100K then burned out in a matter of months and become long term unemployed and then bam... the cycle starts over again. He has won high level numerous awards in his chosen field of interest, and his IQ sits above 190. His personal habits have always been odd, obsessive, erratic, juvenile, largely distracted/detached and lots of alone time, and no real practical support in life. We did a round of diagnosis for bipolar, and the meds did exactly 0 to sooth him. I have felt for years that no one really believed the things I was telling them about our home life. I've gotten a lot of hand pats and reassurance that everything was fine.

 

None the less I have stayed and supported and cared for him in both good times and bad as he has always, always been good intentioned, profoundly lost, and honest to a fault; but mostly unable to care for himself. The last year and a half has been ridiculously stressful. We did however move cross country and this catapulted us into a better level of health care, we also moved to a tiny enclosed town and it quickly became obvious to not only me but the most of the town that something was indeed "off" with my boyfriend. It has caused progress. For the last year he has received consistent mental health care and this week a definitive diagnosis, one that makes sense, and one that is so unexpected that I am at a loss for words. Autism. My life partner has autism. In reading the literature it fits so well that I can't see how I didn't know, how anyone didn't know. Did people know and not say anything perhaps? How did I miss it? It is so obvious now that I know what I'm looking for. There are so many more ramifications to this diagnosis that I did not expect to encounter (especially with a toddler in the home) that I feel so many different ways at the same time.

 

The problems now are much larger than what they were before I had a name for them. The symptoms are irrevocable, and not something that will change with treatment or medication. I don't even know what my question is at this point, there are so many.

 

I am facing a moment in my life where my gut says run, and my head is burned out, and my heart feels like it's just stopped beating. I am searching for compassion and realism in a way that I can't connect at the moment.

Edited September 27, 2013 by tinktronik

[CC12]

The symptoms are irrevocable, and not something that will change with treatment or medication.

 

There's no treatment or medication that can help him?

 

Or are you saying that there's no pill he can take that will cure him of his autism? Yes, that may be true, but surely you never truly expected there to be a magic pill that would solve all his problems, right?

 

The problems now are much larger than what they were before I had a name for them.

 

Obviously, I don't know all the details, but the way I see it, the problems are the exact same problems that existed all along. He's always been autistic. That's not new. The only difference is now you have a scary name for it. But it's progress. Now his doctors can start treating the actual problem instead of chasing after treatments that don't help.

 

I mean, it's completely possible that I'm being a total simpleton about this and not really understanding the gravity of the situation. Feel free to enlighten me, please.

 

In any case, it's difficult news and I'm sorry you're going through this.

[Mr. Lucky]

The symptoms are irrevocable, and not something that will change with treatment or medication. I don't even know what my question is at this point, there are so many.

First off, I admire your commitment to the relationship.

 

But I echo the last poster's thoughts - nothing can be done? I've read about everything from Secretin therapy to Hyperbaric oxygen treatments and I know there's other approaches. Some more digging might be valuable...

 

Mr. Lucky

[Sparty97]

Wow, how did no one spot this, I was thinking Asberger's halfway through your description of him.

[ConstantVoyager]

As someone who is a high functioning autistic and who also has psychiatric diagnosis, I can definitely say that there is training and support he can receive for his autism.

 

I wouldn't stop looking for other issues either. People with autism have a greater chance of having anxiety and mood disorders than the general population.

[tinktronik]

The co-morbids are certainly there, depression, anxiety, ocd, giant angry tantrums, and a fluctuating dash of paranoia to go along with it all. I've never been able to convince him to take meds on any real basis, heck, I can't even get him to take an aspirin when he has a headache.

 

I think at the moment I am just overwhelmed with this turn. The last couple of years have been rough. At the moment he is treating this like it's a joke and in true juvenile manner goes around the house flapping his hands and drooling and flipping lights on and off grumbling about autism and how ridiculous we all are to even suggest it, and that I am the actual problem.

 

I will admit, I am stuck. I have no idea how to work with that. I am frustrated. He cannot care for our child or hold a job and refuses to cooperate in any real significant way. But he's not going anywhere, he will still be here tomorrow and the day after and I will fight him away from his obsessions to make sure he eats at least. I do think with the right supports he could rope some things in and progress in the ways he says he wants to, but at the moment no one is steering us in the right direction and I cannot steer him in any direction at all.

[tinktronik]

Thank you Mr. Lucky. I will do my "google best" and keep asking questions of the professionals.

[tinktronik]

There's no treatment or medication that can help him?

 

Or are you saying that there's no pill he can take that will cure him of his autism? Yes, that may be true, but surely you never truly expected there to be a magic pill that would solve all his problems, right?

 

 

 

Obviously, I don't know all the details, but the way I see it, the problems are the exact same problems that existed all along. He's always been autistic. That's not new. The only difference is now you have a scary name for it. But it's progress. Now his doctors can start treating the actual problem instead of chasing after treatments that don't help.

 

I mean, it's completely possible that I'm being a total simpleton about this and not really understanding the gravity of the situation. Feel free to enlighten me, please.

 

In any case, it's difficult news and I'm sorry you're going through this.

You're not being a simpleton. There are some things to manage additional symptoms. One of the issues though is that he does not realize how his behavior effects others, so he has no real incentive to try to control or manage many of them. I think you're right though, there are things that will help. I just have to be patient and hold out for progress.

 

I did not think there was a pill to cure whatever was going on with him, but in the case of may issues, like bipolar, you're looking at some pretty good progress or stability in the event of the right meds or combination of meds and therapy. Maybe I've been told the wrong prognosis by the docs here and it's not as bad as I'm hearing it though???

 

Now we are looking at a root issue with unchangeable factors, like lack of empathy, and black and white thinking, and adding to it other factors like OCD, ADHD, depression, anxiety, ect. It does seem larger now, to me, though it really is the same thing it was last year.

Edited September 27, 2013 by tinktronik

[whichwayisup]

Tink, welcome back.

 

You're in shock and it's hard to take it all in at once, reaction, how to deal with it, cope with things, changes etc..etc... give yourself time to absorb it. You're overwhelmed right now, rightfully so!

 

You love him and you two will make it work. Austism is not the end of the world, he is functioning and will continue to function, though he'll have bouts that will affect you both.

 

There are tons of different types of counseling and therapies for austism and it can help him and also help you.

 

Read all you can about it. Join groups, online and also support groups (hospitals and other smaller medical buildings offer this) to help you cope and to understand what this all about.

[tinktronik]

WWIU I know you're right. Deep breath for me. I think if we can get some of the additional symptoms managed we will be okay and try to tiptoe it out from there. He has driven me crazy the last couple of years, mostly since our daughter was born. He has been like a full time job all by himself, it's been less like living life and more like a ping pong. Any ideas about how to get him motivated to help himself would be helpful. I do think if we can get the "extras" somewhat balanced out that he will be able to function much more successfully, which would give him more of a sense of satisfaction and benefit us all.

[Mr. Lucky]

I have felt for years that no one really believed the things I was telling them about our home life. I've gotten a lot of hand pats and reassurance that everything was fine.

As someone who has an adult son with a similarly well-disguised (and difficult to diagnose) disorder this part really resonated with me. I'd tell friends and family what we were going through medically and they'd think, after spending 30 minutes with him, I was exaggerating and he was fine. "Don't know what you're talking about, he seems perfectly normal" is what I heard over and over.

 

And yet he couldn't perform two tasks in a row. He lost, broke or dismantled every valuable possession he ever had. He could neither pay attention nor sit still in school. If invited to a friend's house, he'd flip out if we didn't at least drive by the day before to see where it was.

 

I told my wife our lives would be a lot simpler if he had polio or some other visible handicap. I empathize with what you're going through and hope you remember that, unless it works for you and your child, it's not going to be worth it in the long run. Were he totally connected and functioning, I'd doubt he'd want you to sacrifice your life on the altar of his difficulties...

 

Mr. Lucky

[tinktronik]

1. As someone who has an adult son with a similarly well-disguised (and difficult to diagnose) disorder this part really resonated with me. I'd tell friends and family what we were going through medically and they'd think, after spending 30 minutes with him, I was exaggerating and he was fine. "Don't know what you're talking about, he seems perfectly normal" is what I heard over and over.

And yet he couldn't perform two tasks in a row. He lost, broke or dismantled every valuable possession he ever had. He could neither pay attention nor sit still in school. If invited to a friend's house, he'd flip out if we didn't at least drive by the day before to see where it was.

 

I told my wife our lives would be a lot simpler if he had polio or some other visible handicap. I empathize with what you're going through and hope you remember that, unless it works for you and your child, it's not going to be worth it in the long run. Were he totally connected and functioning, I'd doubt he'd want you to sacrifice your life on the altar of his difficulties...

 

Mr. Lucky

Thank you so much for that. I do understand, completely. Do you mind if I ask how your son is now? Did you find help? Does he live independently?

 

My boyfriend everyday lets the dog out the backdoor and does not put him on leash. Every day I tell him the dog is going to run off. Every day the dog runs off and I or the police bring him back. And the next day he does it again insisting that the dog won't run off. Every day for 6 years.

 

Every night he gets up late and turns the garage radio on blaring and then goes to sleep without turning it off and if I don't catch it the police or the neighbors come knocking on the door in the middle of the night. Last week the elderly neighbor started to cry at 2 am on my front porch and I finally just said enough, this is enough, and threw the radio away. The conclusion my boyfriend drew from this was that none of us like music. He was infuriated that I threw his radio away.

 

Sometimes he spends weeks shut in his room, he does not work, or see his child or me, he does not shower. I have to fight him to get him to eat. It's like he does not exist except we know he's in there and are worried and stressed about the situation, and I suspect for him during these times we do not at all exist.

 

And still I have been told it was nothing. The neighbors realize it is something, the local police realize it too now.

 

It feels so maddening sometimes. But other times he is so amazing, funny, sweet, smart and just ON, buzzing away and getting work done and occasionally even cooks up a 5 star meal. Clearly we need help. I do love him, and I don't know how with any good conscious I could leave him to just figure it out. But if we do not get some major assistance and soon for my own sanity and my child's too I will have to do..... something, though I don't know what.

Edited September 28, 2013 by tinktronik

[KathyM]

I would highly recommend getting him psychological counseling on an ongoing basis, as well as look into having him see a psychiatrist for medication consultation. I counsel a man who has Aspergers, and he takes medication that treats his OCD, his anxiety, and his depression. Medication does help, but he also needs therapy. In therapy, we work on his social skills, his conflict resolution skills, and his perception of others, which is often skewed. One of my other clients has an adult son with Aspergers, who is not being treated, and he is not functioning at all in society. Try to get your partner into counseling if at all possible.

[tinktronik]

I would highly recommend getting him psychological counseling on an ongoing basis, as well as look into having him see a psychiatrist for medication consultation. I counsel a man who has Aspergers, and he takes medication that treats his OCD, his anxiety, and his depression. Medication does help, but he also needs therapy. In therapy, we work on his social skills, his conflict resolution skills, and his perception of others, which is often skewed. One of my other clients has an adult son with Aspergers, who is not being treated, and he is not functioning at all in society. Try to get your partner into counseling if at all possible.

 

Thank you Kathy. He is seeing a therapist (who completely missed this). It wasn't until I started regularly calling out "mobile crisis" (local traveling crisis for mental health) and they came to us and saw his space in the house, saw him at home, met and talked to me and the local police that there was obvious evidence that something was just really wrong. They got on it, and got him in here locally, and that's how we've had the progress that we've had so far.

 

Currently his private therapist has him setting up boundaries for me to respect. Ones that he brings home and as rigidly as possible puts into place. And that's all fine, except they are boundaries that will crash us financially. His personal therapist obviously has no idea that my boyfriend himself has no sense of others personal boundaries. This next week the mobile people are getting in touch with him to make him aware of the assessments and work out a plan. They are also recommending medications. Can you tell me, with meds, how do they decide which symptoms to treat first?

[whichwayisup]

He is seeing a therapist (who completely missed this).

 

Not good. Honestly, you need to find another therapist asap, one who specializes in these sort of disorders, as well as finding a group therapy class for yourself to help you cope and a good place to vent out your frustrations! I'm sure there are others who would love to converse and share stories, all help one another out and have that support.

 

You've got it tough sometimes, I feel for you on that.

[KathyM]

Thank you Kathy. He is seeing a therapist (who completely missed this). It wasn't until I started regularly calling out "mobile crisis" (local traveling crisis for mental health) and they came to us and saw his space in the house, saw him at home, met and talked to me and the local police that there was obvious evidence that something was just really wrong. They got on it, and got him in here locally, and that's how we've had the progress that we've had so far.

 

Currently his private therapist has him setting up boundaries for me to respect. Ones that he brings home and as rigidly as possible puts into place. And that's all fine, except they are boundaries that will crash us financially. His personal therapist obviously has no idea that my boyfriend himself has no sense of others personal boundaries. This next week the mobile people are getting in touch with him to make him aware of the assessments and work out a plan. They are also recommending medications. Can you tell me, with meds, how do they decide which symptoms to treat first?

In my client's case, the psychiatrist decided to treat all the symptoms at once, so he started off taking several medications at once. Oftentimes, psychiatrists like to start off with just one medication to check for possible side effects before adding another medication. The psychiatrist treating your partner would be the one to know which medication should be tried first. I would assume the anti-anxiety medication would be a priority, but only the psychiatrist who treats your partner can decide or recommend which symptom should be treated first.

[Els]

Hi, tink.

 

Not sure what advice to give you, honestly. Just sending many hugs your way, and hoping things improve.

[Mr. Lucky]

Thank you so much for that. I do understand, completely. Do you mind if I ask how your son is now? Did you find help? Does he live independently?

I would say he lives "semi" independently. He has his own place but it's close by and he's over for dinner, etc. most every night. He has his own money as the result of a lawsuit over his birth (more later) but my wife manages it for him. We're very involved in his life and he in ours. He took a couple of different meds that helped him get through school but maddeningly refuses to take them now as he says they make him feel "zombie-like".

 

Most heartbreaking for me is that, at 25 years old, he's never had a serious relationship. My wife keeps saying there's someone for everybody but he's a tough guy to be around - volatile mood swings, oblivious to social clues and angry outbursts. That he would miss out on that part of life is tough for me to accept.

 

Does your BF's disability relate to any birth injury? My wife was eclamptic but not diagnosed, had a seizure at 29 1/2 weeks and our son was born. His Apgar was zero and the first thing they told me was that he wasn't going to make it so we look at every day since then as a victory. Even so, as you know better than most, it's been a long and challenging road...

 

Mr. Lucky

[tinktronik]

Not good. Honestly, you need to find another therapist asap, one who specializes in these sort of disorders, as well as finding a group therapy class for yourself to help you cope and a good place to vent out your frustrations! I'm sure there are others who would love to converse and share stories, all help one another out and have that support.

 

You've got it tough sometimes, I feel for you on that.

 

We do. I'm not sure how to go about this all as he has no medial insurance. Maybe I can find a social worker who can be motivated to help. I don't really blame the therapist, or dozens he's seen, as he can kind of, almost, put it together for the hour needed to sit in therapy and he looks a lot like a victim because that's how it spins in his mind.

 

This, I think, is more complicated than a bipolar diagnosis or some depression alone, and does need someone who knows what they're doing in the therapeutic space.

 

One of the more frustrating things is that there are very little/no life problem solving skills in my boyfriend so everything has a million excuses why it won't work and roadblocks are large in his mind. Then it is stuck in his head that way. He needs a person who knows this and knows how to work with this. And like Kathy mentioned "skewed perspectives" on people which is probably the single most horrifying factor in my own life. He can't work out motive of others so he assigns one instead and it tends to have a negative bent to it. That sucks. Really sucks.

 

I am in therapy myself, being treated for anxiety and depression of my own. But I'm living with my trigger so that makes it less functional. The closest decent sized town from us is about an hour away, but there is a teaching hospital there and I would imagine they have something that would help.

 

I'm still working from home (as working away from home is so much more difficult and disrupted in this situation) but I am getting practical help from the therapists here to replace my boyfriend's role in our business with some subs, which will make my life a lot easier, and probably his too.

 

I do need help and guidance from people who know what I'm talking about, because others just look at me like I have two heads when I talk about my daily experience. But so far today is good.

 

In my client's case, the psychiatrist decided to treat all the symptoms at once, so he started off taking several medications at once. Oftentimes, psychiatrists like to start off with just one medication to check for possible side effects before adding another medication. The psychiatrist treating your partner would be the one to know which medication should be tried first. I would assume the anti-anxiety medication would be a priority, but only the psychiatrist who treats your partner can decide or recommend which symptom should be treated first.

 

Thank you Kathy. I would think anxiety would be first too. Hopefully he will be willing to cooperate in the process. I've involved his father and brother with communication as a start. They too have been baffled for years about the behavior and lack of contact. His brother "gets it", but his father is confused but offering any support he can garner other than money, which is fine.

 

Hi, tink.

 

Not sure what advice to give you, honestly. Just sending many hugs your way, and hoping things improve.

 

Thank you. Hugs to you too.

 

I would say he lives "semi" independently. He has his own place but it's close by and he's over for dinner, etc. most every night. He has his own money as the result of a lawsuit over his birth (more later) but my wife manages it for him. We're very involved in his life and he in ours. He took a couple of different meds that helped him get through school but maddeningly refuses to take them now as he says they make him feel "zombie-like".

 

Most heartbreaking for me is that, at 25 years old, he's never had a serious relationship. My wife keeps saying there's someone for everybody but he's a tough guy to be around - volatile mood swings, oblivious to social clues and angry outbursts. That he would miss out on that part of life is tough for me to accept.

 

Does your BF's disability relate to any birth injury? My wife was eclamptic but not diagnosed, had a seizure at 29 1/2 weeks and our son was born. His Apgar was zero and the first thing they told me was that he wasn't going to make it so we look at every day since then as a victory. Even so, as you know better than most, it's been a long and challenging road...

 

Mr. Lucky

 

Ahh, I'm so sorry he refuses meds. There really is no way to convince adults as to what to do in their own interest when the thinking is disordered. Sucks. My boyfriend has the same symptoms you mentioned.

Though he was adopted at birth so we don't know. Though forms of autism are considered to be strongly genetic and my boyfriend's father who is a doctor was friends with the doc who handled pregnancy care for the mother, and he did share that she very much "lived in her own world" and was a "free spirit". I guess you can take from that what you want but it does sound somewhat familiar.

 

I've found it quite healthy to form a relationship with boyfriend's family for my daughter, and I think they are excited about the prospect of some connection to both him and our daughter.

[tinktronik]

Good morning all. Today feels like a good day.

[ASG]

Try to find someone who specialised in autism.

 

My mom is a speech therapist, but she specialises in autism and most of her clients are autistic kids. Most of them are not high functioning, and more often than not have some other mental handicap to go with it.

But she works on their communication skills and social skills and, while they'll never be cured, they get a bit better.

 

A regular psych will probably not know how to deal with an autistic adult who wasn't diagnosed until now. Even psychs specialise in different fields! My step dad specialised in psycho-analisys, so he will refer most people with medication needs to a colleague, as he specialises in talk therapy and not so much in medication therapy.

 

So try to look for someone who knows autism. It will wield better results in the end.

[Zoyalover]

I don't know if I missed this but do you have a support system of friends and family? His family? That is important, you need not go through this alone, nor should he in case you decide to leave.

[Art_Critic]

Good morning all. Today feels like a good day.

 

Hey Tink... serious ***hugz***

[Art_Critic]

I hope you get yourself to an emotional place where you feel good about it all.. you have my utmost respect for how you are handling things, you are a strong lady...

 

More **hugz**

[tinktronik]

I don't know if I missed this but do you have a support system of friends and family? His family? That is important, you need not go through this alone, nor should he in case you decide to leave.

 

I have a very small support system. Through the years many friends have fallen away over misunderstanding my boyfriend's behavior. I do have a core group of lifelong friends that I can always reach out to though.

 

Family, honestly, have been even more difficult because there has been a good bit of judgmental behavior from them that I do not find acceptable toward anyone. I've found that a large number (including family and others) of people simply fear or turn away from what they do not understand. I've really been disgusted by the attitudes of people in my family towards my boyfriend, some of them with their own diagnosis, and feel they should know better. Some of it is so ridiculous. For instance, my mother does not "like" my boyfriend because sometimes he wears slightly dirty pants in public or sits on the floor in a public space. But you know they are his legs and if he wants to cover them with dirty pants or decides to sit on the floor because it's simply more comfortable for him then really I don't see the huge problem. In fact, I find the notion of a grown man that is comfortable enough with himself to just do what is right for him to be charming.

 

I do however have a couple of people in my family who have always been supportive and made sure I was set to live a life of compassion and make decent choices, and who have a much more open-hearted support to offer.

Edited October 3, 2013 by tinktronik