Re: My partner has autism: PLEASE HELP!

[Guest guest]

I am not , but thank you. I have been a member of this group for a while.

It seems that I ask the same questions over and over because I just forget the

answers before I get to put the information to use. The people here seem to have

an unending supply of patience with each other and " newbies " . A very special

group.

 

Drissia

From: raspo67 <raspo67@...>

Subject: [ ] Re: My partner has autism: PLEASE HELP!

Date: Wednesday, February 24, 2010, 8:09 AM

 

Hi ,

You may not realize this, but most of the questions you have asked have been

discussed on this group many, many times.

And there is NO problem with asking all the questions again; there are always

people here who are dedicated to helping others who will repeat the answers

again and again to help people, but if you would like more information more

quickly, you can go to the home page of the group and put your search items into

the box (or click the advanced search link under the search box).

There are also people who are more reluctant to take the time to answer

questions unless it is clear that people have searched and read the discussions

that have taken place before they joined the group. This is a big group and

there is a lot of info in the archives.

I mean this to be helpful to you, so that you can get the most out of being

here.

[Guest guest]

A quality brand fish oil that is molecularly distilled and claims to have 3rd

party testing is a safe option. Nordic Naturals; can you get that? Also, go

for cold water, artic fish sources. Find one that has been recently bottled

(will say so on the bottle). Liquid is cheaper than capsules but might be

difficult to swallow due to the slimey texture and underlying fishy tastes.

I really think adding Omega 3s from fish is important if you can do it. Plant

source Omega 3s are difficult for our bodies to process and need to be given in

large quantities. They are beneficial, just not as productive if the end goal

is getting useful EPA/DHA for brain support/function.

As far as going GFCF, maybe pick GF or CF first to minimize the expense and

maybe make the transition easier? You can see benefits from supplements without

special diets. We sure do. Personally, based on what you describe, I would

remove gluten.

And, yes, enzymes before each meal. I don't know if Houston Nutraceuticals

ships outside of the USA, but if they do (and you can afford it), they are

certainly reputable and I think offer trial sizes. AFP Pep and Zyme Prime are

what we once used. Broad based, plant sourced enzymes.

Fighting Candida can be 'not fun'. Some people really get knocked down when

they first start taking Candidase or other products, so maybe start this one

slowly.

You've taken on a large project! Try one at a time so he can watch for

reactions without getting confused.

Take care,

Pam

> > >

> > > A friend of mine whose child has autism told me about this group. I

> > have been reading the posts, but feel uncertain whether the techniques

> > that are useful for children will work for adults as well. Chelation?

> > Supplements? Diet changes? Is it too late?

> > >

> > > My partner is 24 years old. I fell in love with him not knowing that

> > he had high-functioning autism. (Yes, believe it! Your children will

> > grow up to be beautiful lovable adults, in spite of their disabilities.)

> > >

> > > He is the most loving, intelligent, funny, intuitive and talented

> > person i have ever met. Unfortunately he is also dysfunctional when it

> > comes to every day life.

> > >

> > > He forgets to eat, can't/won't get a job, doesn't seem to know how

> > to plan his day, forgets to do things i ask him, won't do much except

> > the computer on his own...the list goes on and on. I love him very

> > much and i only want to help him. It is hard not to fall into the role

> > of mother when living with someone who has trouble with everyday tasks.

> > >

> > > I was wondering if there were any spouses of autistic adults out

> > there who could give advice? Are there support groups available for

> > partners of autistic adults?

> > >

> > > There is tremendous pressure on me to run both of our lives and with

> > all of the inconsistency that comes with autism, i sometimes feel that

> > i cannot go on. We both live out of the country so have little support

> > in terms of family/friends/medical care/support groups.

> > >

> > > Some more of his issues:

> > >

> > > His biggest physical issues are eating and sleeping. He has been

> > incredibly thin his whole life (zero muscle tone, no body fat). He is

> > 5'8'' (173 cm) and weighs probably 100 pounds at most. He is hungry

> > all of the time. He feels stressed because finding enough to eat is a

> > constant problem. He can eat spoiled food and not get ill. I have the

> > feeling that his body is not absorbing what he eats. If i give him

> > supplements will they pass right through him? Is the malnourished look

> > a feature of autism? Does anyone have any ideas why he is so thin and

> > what to do about it?

> > >

> > > My partner has trouble getting to sleep. He tosses and turns quite

> > violently. He kind of bangs his head on the pillow, slams his arms and

> > feet on the mattress. The strange thing is that he seems unaware of

> > it. I told him it looks like he is in combat. He told me he is

> > battling autism.

> > >

> > > Mental issues one day might include lack of clarity/confusion over

> > simple things, forgetfulness/memory problems (in day to day life, not

> > things learned by himself online or elsewhere), problems with

> > sequencing tasks (things that must be done in a certain order are done

> > in the wrong order), getting dressed (it once took him 45 minutes!).

> > In general he is just not " on task " for the simplest tasks. If i ask

> > him to water my plants, he might water half of them and leave the

> > other half unwatered. If he is doing dishes, he might do all of the

> > dishes in the sink, but not do the ones right next to the sink. Or he

> > might remember feed the dog one day, but not the next 3 days.

> > >

> > > We are very close. He shares emotions, is supportive, entertaining,

> > humorous and considerate. He is a math and computer whiz. He juggles,

> > does magic tricks, rides a unicycle, can beat anyone at ping-pong. I

> > think there is a lot of hope for my partner if he could get perhaps

> > some of the autistic tendencies under control. Until then, life for me

> > is not easy!

> > >

> > > Sorry for the long post! I guess i feel so alone in this battle. I

> > can't really talk about it to friends or family.

> > >

> > > I am grateful that this group exists and look forward to any

> > suggestions or advice.

> > >

> > >

> > >

> >

> >

>

[Guest guest]

Hi ,

I haven't read all responses to your post, but have some suggestions below,

which may be repeating what others have said...

>

> My first thought: We are not on a GFCF diet yet. (I introduced the idea to my

partner and am waiting to see if he will agree to handle it on his own. I

cannot be reminding him what to eat or avoid all of the time. It is just too

much work for me.) All of the supplements are GFCF. Do you think it is wiser

to wait until his diet is GFCF (if he agrees to try it) before looking for

positive responses to supplements?

Are you both living together? If so, are you willing to make meals (including

packing his lunch & snacks) and do the shopping so the house is full of GFCF

foods? Honestly, this is the only way I see GFCF working with an adult who has

trouble keeping up with daily tasks, has memory issues and a big apetite.

Obviously, he needs to agree to get into GFCF but given how much of a lifestyle

change it involves at first, I think it requires an organised person (or coach)

to setup the household & lifestyle " system " that he can then know what he can

eat & stick to it long enough to see if it helps.

You don't need to do any diet before starting the supplements. Just note that

GFCF is just a " starter diet " which may or may not give benefits and figuring

out what foods help vs hinder is a process of observation, education & trials.

Andy has a great post in the archives here about dietary interventions:

http://onibasu.com/archives/am/129186.html

> I started giving Magnesium Citrate (250 mg) with food for muscle relaxation at

night. It has been five days and no improvement so far. Should we wait longer?

Up the dosage? A friend said she saw relief immediately. (I accidentally also

bought Magnesium Oxide. I read that Mag Citrate is better, is this correct?)

Citrate works well for me & my kids. So does citrate. Andy advises against oxide

form because many (most?) don't absorb it well.

> ENZYMES AND PROBIOTICS--So many of you mentioned taking enzymes before meals.

I am excited to try this with him. Does this mean before EVERY meal? I

purchased Country Life brand MAXI-ZYME CAPS (probably because these were the

cheapest ones). Any thoughts on whether certain brands of enzymes work better

than others?

Enzymes by Enzymedica are often recommended in the ASD communities. We've used

them here & I thought they were great BUT they are pricey. I've never used other

brands so can't comment on other brands.

> Can we start both the enzymes and probiotics immediately? Or do we need to

carefully monitor their introduction as well?

>

> Fish Oils/ Cod-liver Oil: I was afraid that heavy metals might get into fish

oil, so i didn't buy any. What are the pros/cons of the fishy stuff? As far as

Omega's i was planning on incorporating ground flax in our diet.

Check out Nordic Naturals, they rate fairly well when it comes to purety. They

have 3rd-party assays (independant tests for purety) on their website, which no

other brand does to my knowledge.

> Candida: Some of you said malabsorption might be related to yeast overgrowth.

I have something called Candidase (Enzymedica brand). It says take for 7 - 14

days. When should i try this? Maybe i should be trying it before everything

else?

Candidase works really well and works best on an empty tummy. And if you're

going to use this, then it would make sense to avoid yeast-feeding foods too.

>

> Upping the anti's: Anti-oxidants/Anti-virals/Anti-fungal/Anti-whatever: I

have GSE (Grapefruit Seed Extract), OoO (Oil of Oregano), and OLE (Olive leaf

extract). Do they all do pretty much the same thing?

GSE and OoO are anti-bacterial and anti-fungal. OLE is anti-viral and

anti-bacterial.

Start low on them, especially the GSE since it can make some people feel worse.

For us, we used OoO for yeast until it didn't work anymore, then switched to

GSE. OLE is great for us for viruses (like strep) but it does cause a LOT of

yeast for my daughter.

>Should i give all of them or just pick one? Any advice on when to start

administering? Which ones are good to take long-term and which can only be

given for a limited period of time?

Andy recommends that parents not rotate anti-fungals (or the yeast becomes

resistant) so try one and use it as long as it works.

> > I was wondering if there were any spouses of autistic adults out there who

could give advice? Are there support groups available for partners of autistic

adults?

There is an adult list called frequent-dose-chelation for adults who are

chelating using the Cutler protocol.

There must be some groups out there for mates of autistics, but I don't know of

any.

> > There is tremendous pressure on me to run both of our lives and with all of

the inconsistency that comes with autism, i sometimes feel that i cannot go on.

We both live out of the country so have little support in terms of

family/friends/medical care/support groups.

This is tough. I'm also out of my home country but have found local support

groups. Look in the lists or contact local autism associations to find as

much support locally as possible.

> > His biggest physical issues are eating and sleeping. He has been incredibly

thin his whole life (zero muscle tone, no body fat). He is 5'8'' (173 cm) and

weighs probably 100 pounds at most. He is hungry all of the time. He feels

stressed because finding enough to eat is a constant problem.

Hmmm, I see possible adrenal issues here. I have a very skinny son and his

issues also involve weak adrenals.

Does your boyfriend crave sugary foods & carbs? If so, consider weak adrenals.

Search the archives for info, there is a lot here about the symptoms, but

adrenal-insufficient people are typically very thin, anxious, respond poorly to

stress and can be emotionally reactive.

> He can eat spoiled food and not get ill. I have the feeling that his body is

not absorbing what he eats. If i give him supplements will they pass right

through him? Is the malnourished look a feature of autism? Does anyone have

any ideas why he is so thin and what to do about it?

Lots of ASDs are skinny & look malnourished! It's probably a combination of many

things but leaky gut is a main reason, but there can be others too. The

supplements & everything else should help.

> > My partner has trouble getting to sleep. He tosses and turns quite

violently. He kind of bangs his head on the pillow, slams his arms and feet on

the mattress. The strange thing is that he seems unaware of it. I told him it

looks like he is in combat. He told me he is battling autism.

> >

> > Mental issues one day might include lack of clarity/confusion over simple

things, forgetfulness/memory problems (in day to day life, not things learned by

himself online or elsewhere), problems with sequencing tasks (things that must

be done in a certain order are done in the wrong order), getting dressed (it

once took him 45 minutes!). In general he is just not " on task " for the simplest

tasks. If i ask him to water my plants, he might water half of them and leave

the other half unwatered. If he is doing dishes, he might do all of the dishes

in the sink, but not do the ones right next to the sink. Or he might remember

feed the dog one day, but not the next 3 days.

Seizures maybe and/or ADD?

Has he ever had an EEG done? My DD has the same issues.

> > We are very close. He shares emotions, is supportive, entertaining,

humorous and considerate. He is a math and computer whiz. He juggles, does

magic tricks, rides a unicycle, can beat anyone at ping-pong. I think there is

a lot of hope for my partner if he could get perhaps some of the autistic

tendencies under control. Until then, life for me is not easy!

Your boyfriend is lucky to have someone like you to care for him, I can only

wish the same for my daughter some day!

I do see the possible danger that others have pointed out about mothering or

trying to change someone else, but you seem to see them also so I can just wish

you the best in your efforts & relationship .

I would not neglect testing for ADD and/or seizures, if he has abnormal results,

medication can make a dramatic difference and possibly help a lot in the

relationship too. And you don't have to view the use of medication as a

permanent thing either. All of us in biomed are seeking to heal our kids and get

rid of the factors that cause the issues in the first place but since this is a

lengthy process, medication can help alleviate many symptoms while healing is

taking place.

[Guest guest]

Thanks again for all of the responses. I have responded to some comments

offline. Trying to catch up, there is so much to learn!

Jen,

What effects did you see after giving inositol? I don't have it, but am

thinking about ordering it.

Interesting observation: My partner said that the melatonin we just tried (3

mcg the first night because he popped the pill before i could get him to break

it in half) perhaps made him feel more tired and able to fall asleep, but that

it didn't necessarily help him sleep well. And he still woke up in the middle of

the night. He said he doesn't relax at night and needs to deal with tension so

that he can get good quality sleep. (I am glad he is so observant and

articulate.)

B vitamins for tension? More Magnesium? (just upped the dose to 500 mg/day.

said to take more. Should we increase it slowly or just up it all at

once? Any preferred brands?)

I loved the list suggestion. I like routine (when it is productive or fun) and

i love lists. I tried to get my partner to make them, but so far i have to nag

him to remember to make them. Then the other things that happen during the day

tend to negate his neat list. On the top of his list: Make a list. The second

item: Take a shower. It is hard when an adult has to remind himself to do such

basic things.

Our house is slightly cluttered. It is mostly my fault. I am a busy and

creative type who has lots of projects going on all at once. Cleaning up

usually means finishing my projects or deciding not to finish them.

Thanks for the suggestions. I will try to incorporate them as we can.

> >

> > A friend of mine whose child has autism told me about this group. I have

been reading the posts, but feel uncertain whether the techniques that are

useful for children will work for adults as well. Chelation? Supplements? Diet

changes? Is it too late?

> >

> > My partner is 24 years old. I fell in love with him not knowing that he had

high-functioning autism. (Yes, believe it! Your children will grow up to be

beautiful lovable adults, in spite of their disabilities.)

> >

> > He is the most loving, intelligent, funny, intuitive and talented person i

have ever met. Unfortunately he is also dysfunctional when it comes to every

day life.

> >

> > He forgets to eat, can't/won't get a job, doesn't seem to know how to plan

his day, forgets to do things i ask him, won't do much except the computer on

his own...the list goes on and on. I love him very much and i only want to help

him. It is hard not to fall into the role of mother when living with someone

who has trouble with everyday tasks.

> >

> > I was wondering if there were any spouses of autistic adults out there who

could give advice? Are there support groups available for partners of autistic

adults?

> >

> > There is tremendous pressure on me to run both of our lives and with all of

the inconsistency that comes with autism, i sometimes feel that i cannot go on.

We both live out of the country so have little support in terms of

family/friends/medical care/support groups.

> >

> > Some more of his issues:

> >

> > His biggest physical issues are eating and sleeping. He has been incredibly

thin his whole life (zero muscle tone, no body fat). He is 5'8'' (173 cm) and

weighs probably 100 pounds at most. He is hungry all of the time. He feels

stressed because finding enough to eat is a constant problem. He can eat

spoiled food and not get ill. I have the feeling that his body is not absorbing

what he eats. If i give him supplements will they pass right through him? Is

the malnourished look a feature of autism? Does anyone have any ideas why he is

so thin and what to do about it?

> >

> > My partner has trouble getting to sleep. He tosses and turns quite

violently. He kind of bangs his head on the pillow, slams his arms and feet on

the mattress. The strange thing is that he seems unaware of it. I told him it

looks like he is in combat. He told me he is battling autism.

> >

> > Mental issues one day might include lack of clarity/confusion over simple

things, forgetfulness/memory problems (in day to day life, not things learned by

himself online or elsewhere), problems with sequencing tasks (things that must

be done in a certain order are done in the wrong order), getting dressed (it

once took him 45 minutes!). In general he is just not " on task " for the simplest

tasks. If i ask him to water my plants, he might water half of them and leave

the other half unwatered. If he is doing dishes, he might do all of the dishes

in the sink, but not do the ones right next to the sink. Or he might remember

feed the dog one day, but not the next 3 days.

> >

> > We are very close. He shares emotions, is supportive, entertaining,

humorous and considerate. He is a math and computer whiz. He juggles, does

magic tricks, rides a unicycle, can beat anyone at ping-pong. I think there is

a lot of hope for my partner if he could get perhaps some of the autistic

tendencies under control. Until then, life for me is not easy!

> >

> > Sorry for the long post! I guess i feel so alone in this battle. I can't

really talk about it to friends or family.

> >

> > I am grateful that this group exists and look forward to any suggestions or

advice.

> >

> >

> >

>

[Guest guest]

We live in the US and still choose to do our own supplementation without the

advice of a physician. There are few here who know about the natural

alternatives anyway. We are better off reading this group's advice and trying

to figure it out on our own.

Best luck to you and your loved one!!

> > >

> > > A friend of mine whose child has autism told me about this group. I have

been reading the posts, but feel uncertain whether the techniques that are

useful for children will work for adults as well. Chelation? Supplements? Diet

changes? Is it too late?

> > >

> > > My partner is 24 years old. I fell in love with him not knowing that he

had high-functioning autism. (Yes, believe it! Your children will grow up to be

beautiful lovable adults, in spite of their disabilities.)

> > >

> > > He is the most loving, intelligent, funny, intuitive and talented person i

have ever met. Unfortunately he is also dysfunctional when it comes to every

day life.

> > >

> > > He forgets to eat, can't/won't get a job, doesn't seem to know how to plan

his day, forgets to do things i ask him, won't do much except the computer on

his own...the list goes on and on. I love him very much and i only want to help

him. It is hard not to fall into the role of mother when living with someone

who has trouble with everyday tasks.

> > >

> > > I was wondering if there were any spouses of autistic adults out there who

could give advice? Are there support groups available for partners of autistic

adults?

> > >

> > > There is tremendous pressure on me to run both of our lives and with all

of the inconsistency that comes with autism, i sometimes feel that i cannot go

on. We both live out of the country so have little support in terms of

family/friends/medical care/support groups.

> > >

> > > Some more of his issues:

> > >

> > > His biggest physical issues are eating and sleeping. He has been

incredibly thin his whole life (zero muscle tone, no body fat). He is 5'8''

(173 cm) and weighs probably 100 pounds at most. He is hungry all of the time.

He feels stressed because finding enough to eat is a constant problem. He can

eat spoiled food and not get ill. I have the feeling that his body is not

absorbing what he eats. If i give him supplements will they pass right through

him? Is the malnourished look a feature of autism? Does anyone have any ideas

why he is so thin and what to do about it?

> > >

> > > My partner has trouble getting to sleep. He tosses and turns quite

violently. He kind of bangs his head on the pillow, slams his arms and feet on

the mattress. The strange thing is that he seems unaware of it. I told him it

looks like he is in combat. He told me he is battling autism.

> > >

> > > Mental issues one day might include lack of clarity/confusion over simple

things, forgetfulness/memory problems (in day to day life, not things learned by

himself online or elsewhere), problems with sequencing tasks (things that must

be done in a certain order are done in the wrong order), getting dressed (it

once took him 45 minutes!). In general he is just not " on task " for the simplest

tasks. If i ask him to water my plants, he might water half of them and leave

the other half unwatered. If he is doing dishes, he might do all of the dishes

in the sink, but not do the ones right next to the sink. Or he might remember

feed the dog one day, but not the next 3 days.

> > >

> > > We are very close. He shares emotions, is supportive, entertaining,

humorous and considerate. He is a math and computer whiz. He juggles, does

magic tricks, rides a unicycle, can beat anyone at ping-pong. I think there is

a lot of hope for my partner if he could get perhaps some of the autistic

tendencies under control. Until then, life for me is not easy!

> > >

> > > Sorry for the long post! I guess i feel so alone in this battle. I can't

really talk about it to friends or family.

> > >

> > > I am grateful that this group exists and look forward to any suggestions

or advice.

> > >

> > >

> > >

> >

>

[Guest guest]

,

Thanks again. My partner said he doesn't have any fillings. I am not sure

whether his mother does. ? I will ask her. He didn't have a flu shot recently

or at all as far as i know, but when he was 3 months old he rejected his

mother's milk. His parents tried to give him formula, but he was allergic to it

(they said it was because it contained cow's milk?). Then he went for 3 months

without gaining ANY weight (age 3 to 6 months)!! I am not sure whether he had

been vaccinated around this time and started to have symptoms from the

vaccination or whether he was just born the way he is. His mother said he

didn't seem hungry as a baby, but looked happy so they didn't force him to feed

often.

Question: I still have amalgam fillings, should i have them removed? Also, my

mother's mouth is full of amalgam fillings and while she doesn't seem to have

PDD, she has some issues with chronic confusion, unhappiness, poor memory, OCD.

Do you think everyone should have their amalgam removed?

I will look into getting a hair test done.

Thanks,

>

> Hi ,

> How many mercury amalgam dental fillings does your partner have? He didn't

get the flu shot, did he? He may want to get a DDI (Doctor's Data, Inc.) hair

elements test and apply the counting rules. This can be ordered through DLS

(Direct Lab Services) and they'll give a discount if he mentions this group.

That way he can see that toxic metals may be causing some of his issues.

" Amalgam Illness " and " Hair Test Interpreting " by Andy Cutler could also prove

enlightening. As scattered as he sounds it would be good for him to get some

routine/schedule in place for food, sleep, etc. before trying to tackle anything

like chelation. If he has any mercury amalgam dental fillings he would have to

have them safely removed before he could chelate anyway.

>

> Recommendations:

> Houston enzymes

> Probiotics (can be liquid or chewable for more likelihood of absorption)

> Epsom salt baths or foot soaks (probably best before trying to sleep as they

have a calming effect)

> DDI hair elements test with counting rules applied

> Talk about gluten-free, casein-free (GFCF) diet (he has to want to try this

and it might seem counter-intuitive to limit food since he also feels he can't

get enough). One idea would be to introduce some GFCF foods and incorporate

them, before any talk of removing the gluten-containing ones.

> S S

>

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>

[Guest guest]

There are so many reasons behind poor sleep, so don't get too discouraged if

melatonin isn't his answer. I cannot take it at all; it makes me wake up in the

middle of the night with racing thoughts. I've read it might have to do with my

underlying seratonin levels (melatonin is manufactured from serotonin). I would

start with a lower dose than 3 mcg.

Also, elevated copper can cause sleep disturbances. I'm pretty sure I see this

with my son (who does, though, respond well to melatonin). A Doctor's Data hair

test would be a reasonable way to measure.

It will be up to him to adopt a night time routine (turn off that computer!) to

help him relax before sleep.

Moderate exercise during the day is so critical. See if he'll walk outside for

30+ mins/day.

Calcium with the magnesium might help, too. A component in green tea called

l-theanine is avaiable in supplements. It has been shown to work within 30-40

mins by increasing alpha brain waves (promotes relaxation but not drowsiness).

100 mgs is a good capsule to take, and can be taken as needed up to probably 600

mgs/day. Maybe try this in the evening?

Ugh. So many ideas. I hope something works. Sleep is so under-rated until you

are missing it!

Pam

>

> Thanks again for all of the responses. I have responded to some comments

offline. Trying to catch up, there is so much to learn!

>

> Jen,

>

> What effects did you see after giving inositol? I don't have it, but am

thinking about ordering it.

>

> Interesting observation: My partner said that the melatonin we just tried (3

mcg the first night because he popped the pill before i could get him to break

it in half) perhaps made him feel more tired and able to fall asleep, but that

it didn't necessarily help him sleep well. And he still woke up in the middle of

the night. He said he doesn't relax at night and needs to deal with tension so

that he can get good quality sleep. (I am glad he is so observant and

articulate.)

>

> B vitamins for tension? More Magnesium? (just upped the dose to 500 mg/day.

said to take more. Should we increase it slowly or just up it all at

once? Any preferred brands?)

>

> I loved the list suggestion. I like routine (when it is productive or fun)

and i love lists. I tried to get my partner to make them, but so far i have to

nag him to remember to make them. Then the other things that happen during the

day tend to negate his neat list. On the top of his list: Make a list. The

second item: Take a shower. It is hard when an adult has to remind himself to

do such basic things.

>

> Our house is slightly cluttered. It is mostly my fault. I am a busy and

creative type who has lots of projects going on all at once. Cleaning up

usually means finishing my projects or deciding not to finish them.

>

> Thanks for the suggestions. I will try to incorporate them as we can.

>

>

>

>

[Guest guest]

My son did the same thing with Melatonin.  I found Valerian root to work

better.  I started giving it to him daily and he started sleeping through the

night.  Now I only give it to him if he has had a nap during the day which

indicates to me that he may have difficulty falling asleep.

http://aydansrecovery.blogspot.com/2009_08_01_archive.html

From: Pamela H <phaselow@...>

Subject: [ ] Re: My partner has autism: PLEASE HELP!

Date: Friday, February 26, 2010, 6:23 AM

 

There are so many reasons behind poor sleep, so don't get too discouraged

if melatonin isn't his answer. I cannot take it at all; it makes me wake up in

the middle of the night with racing thoughts. I've read it might have to do

with my underlying seratonin levels (melatonin is manufactured from serotonin).

I would start with a lower dose than 3 mcg.

Also, elevated copper can cause sleep disturbances. I'm pretty sure I see this

with my son (who does, though, respond well to melatonin). A Doctor's Data hair

test would be a reasonable way to measure.

It will be up to him to adopt a night time routine (turn off that computer!) to

help him relax before sleep.

Moderate exercise during the day is so critical. See if he'll walk outside for

30+ mins/day.

Calcium with the magnesium might help, too. A component in green tea called

l-theanine is avaiable in supplements. It has been shown to work within 30-40

mins by increasing alpha brain waves (promotes relaxation but not drowsiness).

100 mgs is a good capsule to take, and can be taken as needed up to probably 600

mgs/day. Maybe try this in the evening?

Ugh. So many ideas. I hope something works. Sleep is so under-rated until you

are missing it!

Pam

>

> Thanks again for all of the responses. I have responded to some comments

offline. Trying to catch up, there is so much to learn!

>

> Jen,

>

> What effects did you see after giving inositol? I don't have it, but am

thinking about ordering it.

>

> Interesting observation: My partner said that the melatonin we just tried (3

mcg the first night because he popped the pill before i could get him to break

it in half) perhaps made him feel more tired and able to fall asleep, but that

it didn't necessarily help him sleep well. And he still woke up in the middle of

the night. He said he doesn't relax at night and needs to deal with tension so

that he can get good quality sleep. (I am glad he is so observant and

articulate.)

>

> B vitamins for tension? More Magnesium? (just upped the dose to 500 mg/day.

said to take more. Should we increase it slowly or just up it all at

once? Any preferred brands?)

>

> I loved the list suggestion. I like routine (when it is productive or fun)

and i love lists. I tried to get my partner to make them, but so far i have to

nag him to remember to make them. Then the other things that happen during the

day tend to negate his neat list. On the top of his list: Make a list. The

second item: Take a shower. It is hard when an adult has to remind himself to

do such basic things.

>

> Our house is slightly cluttered. It is mostly my fault. I am a busy and

creative type who has lots of projects going on all at once. Cleaning up

usually means finishing my projects or deciding not to finish them.

>

> Thanks for the suggestions. I will try to incorporate them as we can.

>

>

>

>

[Guest guest]

I'm chiming in rather late. Comments interspersed below.

>

> A friend of mine whose child has autism told me about this group. I have been

reading the posts, but feel uncertain whether the techniques that are useful for

children will work for adults as well. Chelation? Supplements? Diet changes?

Is it too late?

------

It's not too late. I was diagnosed with a life-threatening medical condition

the month before my 36th birthday. Doctor's told me " People like you don't get

well. " This group and other alternative sources have helped me figure out how

to get well. I'm 44 and healthier than I have ever been. A little chelation, a

whole lot of supplements, and major dietary and lifestyle changes have worked

for me. It depends on how much you are willing to put into it and how far you

are willing to go -- both of you, because you cannot make him change. That

would likely be disastrous.

>

> My partner is 24 years old. I fell in love with him not knowing that he had

high-functioning autism. (Yes, believe it! Your children will grow up to be

beautiful lovable adults, in spite of their disabilities.)

----

My oldest son is 22. I have always found him delightful and adorable. If other

people don't, their loss. :-D (Yes, he can also be quite crazy-making at times

too. But I generally prefer his company to that of most people on the planet.)

>

> He is the most loving, intelligent, funny, intuitive and talented person i

have ever met. Unfortunately he is also dysfunctional when it comes to every

day life.

>

> He forgets to eat, can't/won't get a job, doesn't seem to know how to plan his

day, forgets to do things i ask him, won't do much except the computer on his

own...the list goes on and on. I love him very much and i only want to help

him. It is hard not to fall into the role of mother when living with someone

who has trouble with everyday tasks.

----

" Forgets to eat " may mean he has a poor appetite mechanism. Mine was worse when

I was sicker. Working on gut issues may help improve this, along with other

things you mention (like malabsorption and excessive thinness).

" Forgets to do things " can be memory issues. Some supplements help give brain

support and can improve this, such as b vitamins, coconut oil, glyconutrients,

and co-q-10. But there are also practices you can institute to help overcome

this. Instead of telling him to do something, leave a sticky note some place it

cannot be missed. We have a central area for leaving sticky notes. We use them

for grocery lists and other reminders. I also email my sons from work

sometimes. Heck, I email myself from work at times so *I* won't forget

something.

" Role of mother " -- Please realize this is not just him, it is also you. I am

reminded of a comment on a homeschooling list some years back: " All these

aspies seem to be divorced " . My ex-husband likely would qualify for a diagnosis

of HFA. He always swore that a lot of the things I felt he could not do were

things he handled fine when we were apart. I don't entirely agree with his

assessment of that but it's clear that he and I didn't mix well and we tripped

each other up. He also felt there were things I failed at. One example: He

did most of the vacuuming because he felt I didn't do it enough. If he had left

it be, I would have vacuumed about every 10 days. He felt compelled to do it

weekly. I saw no reason to do it again 3 days later. In my mind, the clock

reset once he did the vacuuming. A week later, he was again ballistic that I

hadn't yet done any vacuuming so he would vacuum again. And my internal

vacuuming clock would reset and...so on and so forth. I felt wrongfully

accused, he remained convinced I was an incompetent, lazy dolt. Sometimes our

own actions *cause* another person to behave in the way we are critical of. And

it can be extremely hard to sort such things out.

I will suggest that you need to work on yourself at least as much as you work on

him. I stayed married as long as I did (about 22 years) in part because I was

convinced that if I dumped him too soon, it would be " new face, same old

crapola " . I spent a lot of time in therapy, keeping journals, working on my

issues, wondering which part of our crap was mine, which was his, and which was

" ours " (something that existed because of how we interacted, not specifically

caused by either one of us). I spent a lot of time wondering why I got involved

with someone I found so difficult to deal with and so crazy-making. I also

spent a lot of time trying to figure out his traits in more neutral terms than

the very blaming kind of language I was prone to when I was younger. I felt his

traits were two-edged swords and had a downside and an upside. Ultimately, we

divorced. But neither of us regretted marrying and the divorce was amicable.

We both got something we needed out of it. We grew as people and we loved each

other as best we knew how under very difficult circumstances. I am better for

having known and loved him, even though the marriage wasn't very happy and was

always quite difficult. But I'm sure I am so at peace with it largely because I

didn't allow myself to simply blame it all on him and ignore my own piece of the

puzzle.

>

> Some more of his issues:

>

> His biggest physical issues are eating and sleeping. He has been incredibly

thin his whole life (zero muscle tone, no body fat). He is 5'8'' (173 cm) and

weighs probably 100 pounds at most. He is hungry all of the time. He feels

stressed because finding enough to eat is a constant problem. He can eat

spoiled food and not get ill. I have the feeling that his body is not absorbing

what he eats. If i give him supplements will they pass right through him? Is

the malnourished look a feature of autism? Does anyone have any ideas why he is

so thin and what to do about it?

-----

Work on the gut. Have him hair-tested. If there are metals, do chelation.

Some things that may help his gut: coconut oil, glyconutrients, sea salt,

organic butter, lettuce, organic yogurt (or probiotics), gelatin, getting excess

acidity under control.

>

> My partner has trouble getting to sleep. He tosses and turns quite violently.

He kind of bangs his head on the pillow, slams his arms and feet on the

mattress. The strange thing is that he seems unaware of it. I told him it

looks like he is in combat. He told me he is battling autism.

----------

Some people find that cleaning up the sleep area helps with sleep issues.

Co-q-10 in the morning is gentle way to address the entire waking/sleeping

chemical cycle of the brain. I did better with that than with melatonin at

night. Treating for nutritional deficiencies may also help. I have to get

enough b vitamins, iron and calcium or I get restless leg syndrome and kick a

lot and toss and turn. I am infamous for being a restless sleeper. When I

complained that my youngest son slept all over the bed and flailed about and was

dangerous to let into our bed when he was little, my spouse, sister and mother

all said things like " Well he has to get *something* from YOU. " and " Oh, yeah,

like the time you gave me a bloody nose in your sleep and didn't even wake up. "

>

> Mental issues one day might include lack of clarity/confusion over simple

things, forgetfulness/memory problems (in day to day life, not things learned by

himself online or elsewhere), problems with sequencing tasks (things that must

be done in a certain order are done in the wrong order), getting dressed (it

once took him 45 minutes!). In general he is just not " on task " for the simplest

tasks. If i ask him to water my plants, he might water half of them and leave

the other half unwatered. If he is doing dishes, he might do all of the dishes

in the sink, but not do the ones right next to the sink. Or he might remember

feed the dog one day, but not the next 3 days.

>

If he has problems with a sense of time, a task-oriented schedule may work

better than a " deadline " oriented schedule. This has worked extremely well for

my son. It requires a bit of " apprenticing " and some routines to be developed.

So if he waters the plants regularly based on a certain indicator (instead of

when asked), and it is routine, he might be fine. Disrupt the routine or have a

time-based trigger and it may fall apart. Also, you could look into options

like those little automatic watering glass bulbs.

For clothes: A lot of aspies cope better if they have a limited wardrobe of

similar items (like Einstein and his decision to own five identical outfits).

One of the reasons for this is sensory issues. Helping him find materials that

don't trigger sensory overload and keeping his clothes similar in texture and

style can help minimize clothing problems.

Hope that helps and good luck with all this.

Michele

http://www.healthgazelle.com

http://www.kidslikemine.com

http://www.solanorail.com