books on being married to someone with autism

[popmom]

Looking for recommendations. I had no idea there were so many. I'm overwhelmed trying to read reviews.

Who are some trusted authorities on the subject? Any other resources, YouTube channels, etc are appreciated. It's time--long overdue-- for dh and I to give our marriage the tlc it desperately needs. 

to clarify: It is likely we are BOTH married to someone with autism. 🙂 

Edited March 30, 2023 by popmom

[Rosie_0801]

What about it particularly? I mean you've been married long enough to pretty well know how to be married to one another. If you're both autistic, don't you already have a culturally autistic household?

[Rosie_0801]

I ordered Kay Kerr's new book, which is unlikely to be condescending seeing how she's autistic herself.

If you want to read some romances together, I would love to hear your opinions of Helen Hoang's. lol

[popmom]

Thanks, Rosie.

deleted

Edited March 30, 2023 by popmom

[Rosie_0801]

Ah. That's not really an autism problem, though it is obviously a relevant co-morbidity. It might be an OCD problem, but you all mightn't be able to assess that until he's tried anger management therapy.

[popmom]

5 minutes ago, Rosie_0801 said:

Ah. That's not really an autism problem, though it is obviously a relevant co-morbidity. It might be an OCD problem, but you all mightn't be able to assess that until he's tried anger management therapy.

It's not an autism problem? That's interesting. And confusing. How is OCD related to processing? as in the process of manipulating and making sense of information--cognitive processing. I clearly do not know much about this.

Edited March 30, 2023 by popmom

[Corraleno]

I read several books on managing a relationship with an autistic partner, and found this one the most helpful: The Other Half of Asperger Syndrome (Autism Spectrum Disorder): A Guide to Living in an Intimate Relationship with a Partner who is on the Autism Spectrum

 

 

[popmom]

Just now, Corraleno said:

I read several books on managing a relationship with an autistic partner, and found this one the most helpful: The Other Half of Asperger Syndrome (Autism Spectrum Disorder): A Guide to Living in an Intimate Relationship with a Partner who is on the Autism Spectrum

 

 

Thanks for the rec. I saw that one. I was considering it.

[Rosie_0801]

1 minute ago, popmom said:

It's not an autism problem? That's interesting. And confusing. How is OCD related to processing?

Autism may be a contributing factor and is obviously a co-morbidity, but that's not a mandatory feature or manifestation of autism, no. Recurring thoughts can be stupid stuff our brains do because we're leaving IQ points without enough to do, or it can cross the line into OCD. It's obviously crossing a line. It's also a common co-morbidity with autism. 

If someone is traumatising their nearest and dearest and is fine with it, that's a jerk problem, not an autism problem.

[Corraleno]

One book I would not recommend is Kathy Marshak's Life With a Partner or Spouse With Asperger Syndrome. That one is mostly just rambling invented "dialogues" between the author and fictionalized patients; there wasn't a lot of substance and I thought her attitude was really patronizing.

[popmom]

4 minutes ago, Rosie_0801 said:

Autism may be a contributing factor and is obviously a co-morbidity, but that's not a mandatory feature or manifestation of autism, no. Recurring thoughts can be stupid stuff our brains do because we're leaving IQ points without enough to do, or it can cross the line into OCD. It's obviously crossing a line. It's also a common co-morbidity with autism. 

If someone is traumatising their nearest and dearest and is fine with it, that's a jerk problem, not an autism problem.

That makes sense.

[Rosie_0801]

I found Rudy Simone's books a reasonably good start, but perhaps they are a bit out of date now more has been written.

[Rosie_0801]

I still think it is anger management you guys need to be looking into, though. None of the autism books I've ever read are going to cure this because it is not a mismatched dialect problem.

[prairiewindmomma]

Yeah, I don’t interpret what you describe as primarily an autism problem either. I think anger management therapy for him would be my priority. Anger rumination is more common in autism, but address the anger management to stop the abuse first, then deal with the cascading issues, iykwim.

Also, if you have the ability to take yourself to therapy, I would go. 

 

[Storygirl]

My person with autism is not my spouse, and I don't have a book recommendation. But I'm seeing inflexible thinking in your example. Getting stuck on one way of thinking, or stuck on talking about it. I think some with autism do talk on and on about the same thing, past the point of helpfulness or interest of the other person. My person does have an anger issue, as well, and will ask the same questions over and over, hoping to get a different answer. He's not processing his thoughts in the way that you describe, but he does get stuck in his thoughts.

I'm not sure whether you can help the other person with this, unless they are willing to work on it themselves. My person is not willing to work on things, unfortunately. But some people are! So that does vary.

[popmom]

Just now, prairiewindmomma said:

Yeah, I don’t interpret what you describe as primarily an autism problem either. I think anger management therapy for him would be my priority. Anger rumination is more common in autism, but address the anger management to stop the abuse first, then deal with the cascading issues, iykwim.

Also, if you have the ability to take yourself to therapy, I would go. 

 

I spent a year and a half in therapy over my mother. I'm tired of therapy. I purposefully never brought up dh because I knew it was a can of worms, and it was just too much all at once. I've dealt with the abusive mother. I am finally prepared to deal with dh's issues. I will go back into counseling eventually--and obviously if dh wants couples therapy. But I'm still resting and processing the mom stuff.

[popmom]

Just now, Storygirl said:

My person with autism is not my spouse, and I don't have a book recommendation. But I'm seeing inflexible thinking in your example. Getting stuck on one way of thinking, or stuck on talking about it. I think some with autism do talk on and on about the same thing, past the point of helpfulness or interest of the other person. My person does have an anger issue, as well, and will ask the same questions over and over, hoping to get a different answer. He's not processing his thoughts in the way that you describe, but he does get stuck in his thoughts.

I'm not sure whether you can help the other person with this, unless they are willing to work on it themselves. My person is not willing to work on things, unfortunately. But some people are! So that does vary.

This describes it perfectly. He gets stuck and can't get unstuck! 

He is willing to get help--finally. We had a serious "come to Jesus" last night. 

[Carrie12345]

4 hours ago, popmom said:

I spent a year and a half in therapy over my mother. I'm tired of therapy. I purposefully never brought up dh because I knew it was a can of worms, and it was just too much all at once. I've dealt with the abusive mother. I am finally prepared to deal with dh's issues. I will go back into counseling eventually--and obviously if dh wants couples therapy. But I'm still resting and processing the mom stuff.

I’d consider the two very different kinds of therapy. Don’t get me wrong, I know the tired of therapy feeling! But they’re really not all the same kind of experience.

If he’s willing, I’d call that a best bet.

Sometimes I think of how great it would be if I could make a Guide to DS book for any future partner of 24yo ds. Not that it would be all that effective, as he and I obviously have an entirely different type of relationship, but I know his usual quirks.

Shutting down is not an unusual aspect with ASD (or adhd, or similar differences.) Physically explosive behaviors in adults are, though.  And no one deserves to be subjected to them.

When ds was little, sometimes physical restraint/close contact pressure helped to regulate his system. That’s obviously not the right option for a fully grown man. But someone specifically knowledgeable about the spectrum could provide therapeutic advice on self-regulation.

[kbutton]

An OT evaluation might help figure out if he has sensory issues that could tamp things down a notch or a few notches. It doesn’t always fix everything, but it was life changing for my son when he was dealing with hyper vigilance.

I don’t have book recommendations, sorry!

[popmom]

3 hours ago, kbutton said:

An OT evaluation might help figure out if he has sensory issues that could tamp things down a notch or a few notches. It doesn’t always fix everything, but it was life changing for my son when he was dealing with hyper vigilance.

I don’t have book recommendations, sorry!

I have thought about this, too. 

[PeterPan]

I think you must have deleted some things, because I'm losing the flow. Like the others I'm going to suggest the only person you can change is yourself and that talking at a marriage doesn't deal with the core deficits of autism and doesn't solve chemistry problems. 

https://www.kelly-mahler.com/what-is-interoception/  This is a core deficit, self-awareness. 

Methylation issues would cause the volatility. It's sort of like saying you want to change the fruit on a tree from oranges to grapes to stop anger without dealing with the underlying causes. 

Autism is not homogenous, so you could be more self-aware (aware of how your feelings, thoughts, body, etc.) work than he is. 

 

[popmom]

14 hours ago, PeterPan said:

I think you must have deleted some things, because I'm losing the flow. Like the others I'm going to suggest the only person you can change is yourself and that talking at a marriage doesn't deal with the core deficits of autism and doesn't solve chemistry problems. 

https://www.kelly-mahler.com/what-is-interoception/  This is a core deficit, self-awareness. 

Methylation issues would cause the volatility. It's sort of like saying you want to change the fruit on a tree from oranges to grapes to stop anger without dealing with the underlying causes. 

Autism is not homogenous, so you could be more self-aware (aware of how your feelings, thoughts, body, etc.) work than he is. 

 

Thanks, PeterPan! I did delete some details. And I feel like I painted him in a very one dimensional light. When he is "volatile", I never feel afraid of him. He isn't retraumatizing me. It mainly just makes me really angry! I don't think expecting a change in certain behaviors is the same as asking someone to fundamentally change who they are. 

It hit me that he has recently cut back on anxiety meds. (((sigh))) 

I need to look up the methylation thing. I don't know anything about that.

I 100% agree with you on interoception! That is something he needs to learn more about. I don't seek to change him. I want him to feel more comfortable in his own skin, able to sense when he is becoming dysregulated. I can often see it before he does by his fidgeting or posture or a look on his face. It's all very interesting. He's an amazing person, and I meant it when I said our marriage needs TLC. It's not about fixing one or both of us. There is plenty that ((I)) need to work on in the marriage, too. Plenty. The book recs are so I can have a better understanding. I'm trying to educate myself. 

Edited March 31, 2023 by popmom

[Rosie_0801]

I just finished Kay Kerr's 'Love & Autism,' which was only published last week.

You might find it a worthwhile read, @popmom. Not a problem solving read, but worthwhile.

[maize]

OP, I missed some of the details but will share my experience in case it helps. My husband has struggled with anxiety, depression and OCD his entire adult life. After one of our kids was diagnosed with autism it finally clicked for me that he has definite autistic tendencies (those run in my family as well though I personally skew more ADHD I think).

Anyway, irritability and ruminating are a huge issue for him. SSRI medication helps some, but what we finally found that hugely improves his mental functioning and irritability/mood issues is transcranial magnetic stimulation. It's a pretty intensive treatment, the standard protocol is 20 minutes a day every weekday for about 36 treatments total. Dh seems to need to go back and do TMS again about once a year (it's obvious to me long before it is recognizable to him that his anxiety, irritability and depression symptoms are getting worse). 

I highly recommend talking to a psychiatrist who offers TMS treatment about whether it might be a good fit. This has been by far the most transformational thing for our marriage of everything we have tried.

[popmom]

15 hours ago, Rosie_0801 said:

I just finished Kay Kerr's 'Love & Autism,' which was only published last week.

You might find it a worthwhile read, @popmom. Not a problem solving read, but worthwhile.

Thank you for the recommendation!

[popmom]

11 hours ago, maize said:

OP, I missed some of the details but will share my experience in case it helps. My husband has struggled with anxiety, depression and OCD his entire adult life. After one of our kids was diagnosed with autism it finally clicked for me that he has definite autistic tendencies (those run in my family as well though I personally skew more ADHD I think).

Anyway, irritability and ruminating are a huge issue for him. SSRI medication helps some, but what we finally found that hugely improves his mental functioning and irritability/mood issues is transcranial magnetic stimulation. It's a pretty intensive treatment, the standard protocol is 20 minutes a day every weekday for about 36 treatments total. Dh seems to need to go back and do TMS again about once a year (it's obvious to me long before it is recognizable to him that his anxiety, irritability and depression symptoms are getting worse). 

I highly recommend talking to a psychiatrist who offers TMS treatment about whether it might be a good fit. This has been by far the most transformational thing for our marriage of everything we have tried.

This is very interesting! Thank you for sharing.

Your story is similar to ours. Our youngest was diagnosed several years ago. When we left the psychologist’s office after hearing the dx and full report, dh said he felt like the dr was talking about ((him)) rather than dd. 

[PeterPan]

On 4/3/2023 at 8:49 AM, maize said:

go back and do TMS again about once a year

Does he repeat the entire 36 session course or is it shorter? And is there a preferred system? I'm guessing it has come along since when I first started looking into it several years ago. It seems like it's becoming almost mainstream or more widely available, which means some systems would be more effective than others.

Edited April 4, 2023 by PeterPan

[maize]

1 minute ago, PeterPan said:

Does he repeat the entire 36 session course or is it shorter?

He does the entire course.

There's a newer protocol--theta burst TMS--that is quicker, but I think it may not be FDA-approved yet so is not covered by insurance. It wasn't last time I checked anyway.