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Any other parents of children with autism?

My daughters are both on the mild end of the spectrum. The oldest has more problems socially than the youngest. We finally got a diagnois for her when she was three. We tired to get therapy for her much earlier, but the so called experts just kept telling us some kids take longer to speak (she was 4 when she finally started talking instead of screaming all the time.) Kids ave trantrums (not 12+ hour ones that lead to convulsions!) Finally, she threw a tantrum at the doctor's office which convinced him to give us the recommendation for therapy our insurance required to get help. Four years and much therapy later, our dd is very nearly exactly like NT kids, although, she has problems maing friends and in social situations.

We homeschool her because the schools here are terrible and we do not want her to go through the same experiences (all bad) we have heard about other kids with autism having in the public schools. We try to emphasize good matters. I am hoping by homeschooling her and trying to control the situations she is in with other kids , she will have good experiences and form positive relationships. It took me a long time to accept that although she likes other kids she can take them or leave them. Family and ideas mean more to her than friends. Friends were super important to me as a kid, so it is hard for me to understand this take 'em or leave 'em mentality she has.

I have allowed my religious family to talk to her about their beliefs in god. She is confused about why people believe in statues. She told me about a month ago, "God is a statue. Grandma prays to a statue.: I thought it was hiliarious.

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Permalink Reply by Jo Jerome on August 30, 2010 at 11:16pm

"God is a statue. Grandma prays to a statue.: I thought it was hiliarious.

Spoken like an Aspie!

Not a parent but I didn't get the diagnosis until I was 39. So lots of "Wow, I wonder what Mom and Dad would/could/should have done differently? Honestly, don't know. I don't envy parents their tasks!

I do know that I kind of lucked out with the first school I went to grades 1-6. Private, Geeky-smart-kids school, but not the stereotype of uniforms and rich kid cliques. This school was founded by Holocaust survivors with the intent of teaching kids independence, diversity, creativity, out-of-the-box thinking/learning/teaching styles. So while my parents put me there for my test scores, by chance it turned out to be a most awesome place for an Autistic.

Then 7th grade came public school. Cue the horror movie.

So again, I don't envy you your task.

Permalink Reply by Daniel on September 5, 2010 at 8:50am

Grace, I'm sorry to see that there aren't many parents in this group that you could connect to. Hopefully, some will join with time. Stay with us! :)

Have you tried the parents' forum on Wrongplanet (http://www.wrongplanet.net/forum19.html) or the families' and clinicians' one on GRASP (http://www.grasp.org/subsc.htm)? The one on Wrongplanet is moderated by a mother.

Permalink Reply by Grace Fitzpatrick on September 5, 2010 at 10:48am

i know other parents of children with autism, but they are mainly religious. My sister's son also has it and his is much worse than my daughter's. She has her son going to a therapist he doesn't like. I told her it would never work. My daughters loved there therapist to death and I think it made a big difference. My daughters have made much more progress than her son. Of course, I think there are a lot of reasons for that.

The teen years are hard for everyone, but most especially for those with autism, because they have difficulty with social relationships and understanding social situations. In junior high and high school, it is all about social relations.

I read The Unwritten Rules of Social Relationships: Decoding Social Mysteries Through the Unique Perspectives of Autism by Temple Gradin and Sean Barron. It really helped me understand how my daughter views the social world. My husband and I work really hard at teaching our children manners, because we know - especially the oldest - has trouble in social situations.

I believe one day my daugthers' ability to focus on one thing so intently to the exclusion of all other things will come in handy.

Permalink Reply by Daniel on September 5, 2010 at 1:19pm

The teen years are hard for everyone, but most especially for those with autism, because they have difficulty with social relationships and understanding social situations. In junior high and high school, it is all about social relations.

That is so true! As a former teenager on the autistic spectrum, who has had a very delayed development, I would like to offer my insight here.

Correct me if I'm off the mark, but, the way I understand teenagers' development, I see it like this: When you're in your teens, you start to realize that you are soon going to need to integrate into the adult world, i.e. find a job that suits you, a lifestyle that suits you, and, for most people, a relationship that suits you. You than start to ask yourself questions like, What kind of person am I? What kind of job/lifestyle/friends/relationship do I want? How am I going to get there?

The trouble is that, as a teenager, I did not have a clue about any of the above. I did not realize that I was going to have a life to live, and that I needed to plan for it. I was just going where circumstances led. As a result, I've now reached the age of 39 without having a job that suits me and without ever having had a girlfriend. I've always had good academic results, but, on its own, that was not enough. It's only in the past few years that I've started to ask myself the questions that most people ask themselves as teens, to answer them and, based on the answers, to take steps to improve my quality of life. I'm telling you this because I do not wish any other autistic person, including your daughters, to go through the same suffering that I have been through.

As a teenager, I didn't realize, either, that it made sense to choose friends based on liking and shared outlook on life, and that I could be proactive about this.

Finally - it's nice to meet a caring parent on this forum, after all the horror stories I've heard. :)

Permalink Reply by Grace Fitzpatrick on September 5, 2010 at 2:53pm

For me, one of the most important things to learn was about the sensory processing issues. My daughter would scream literally every waking hour. We didn't know what was wrong. We tried everything. Every where we went she had screaming, throwing herself on the floor tantrums. We got a lot of mean comments from people everywhere we went. I think that was the hardest part - not knowing what was wrong and people telling us we were horrible parents and our daughter was a brat. There were lots of hurt feelings and tears there.

Once we understood that she had almost "super senses" and the slightest noise or smell or just too much of everything could send her into meltdown mode, we learned how to cope with it. We read loads of books on sensory processing dysfunction. Armed with knowledge and a good therapist, we were able to help her cope with her sensory issues. Now, she has learned how to cope with sensory overload. When she's had too much, she'll go off by herself for awhile until she can cope again. A lot of what helped in therapy was teaching how to deal with her sensory issues. She also had some physical delays in balance, etc. It cost a small fortune for all the therapy, but it was worth it!

Preparing children to live independently is an 18 year job. I have know tons of NT normal people who couldn't answer those questions either. They just fall into a job and a life and at 40, they suddenly realize they've gone the wrong way somehow.

Have you read Unwritten Rules? I hadn't given the rules of social relationships much thought, but these folks clearly have. I found some useful tips for myself and I am NT normal.

I have MS, so I am no longer NT. I think I have a better understanding of my daughter's issues now that I have issues with my senses as well. However, my issues are a loss of sensation not hypersensitivity.

I think I spend a lot more time explaining things most kids get like why we don't tell people they smell bad or that they are fat. I think all kids do this stuff, but most kids grow out of it, but kids with autism will not.

If you have not read Unwritten Rules, if I remember correctly, the guy talks about how he got a girlfriend and a career. I am not much older than you. I think at our age, people start caring a whole lot more about who we really are and less about money and looks. I have a cousin who is divorced and overweight. She thinks no men will like her and her ex was her only chance. She sees a big, fat failure. But I see someone who has had some knocks in life, but is a genuinely a sweet, caring person whom is easy to love. I'm sure if she put herself out there, she would find love again. Don't give up hope. I know two NT normal guys who didn't have girlfriends or marry until they were in their fifties. One was a good friend of mine's husband and they other is marrying my mother in law in October.

Remember almost, if not everyone, our age has a bag full of issues - plenty of which are far worse than autism.

Permalink Reply by Daniel on September 6, 2010 at 11:35am

Yes, sensory issues can be a serious problem! I find it difficult because that's the aspect of my disability that people understand and accept the least. It is also the one that I cannot change, unless the social difficulties where I can learn to compensate for the deficits. It's not going to be a given in your daughter's adult life that she will be able to go to a quiet place for a while when she has a sensory overload. Some employers, for instance, won't want to know. There's a rough ride ahead. It's sad that people are so quick to blame the parents for the problems.

As for the questions that I said teenagers usually ask themselves, my problem wasn't simply that I couldn't answer them, it's that I didn't even realize I needed to ask them.

I haven't read Unwritten Rules, but it sounds interesting and useful. I'll keep it in mind. I have read plenty of books and websites though - about autism, about people and about social relationships - which I have found useful.

Thank you for your words of encouragement about my future life. I'm studying for a degree in geology now with a view to developing a career in the field, and I'm getting very good results, so there is light at the end of the tunnel. I also have many more friends than I have ever had, so that's getting better too!

I agree that everyone has problems in life, including career and relationships, but I think that having an autism spectrum disorder makes it harder to cope. I've only told you a small part of my career problems, it's more than having a direction in life that I don't like. For instance, my employment history is very patchy, and some situations I have been in have caused a lot of pain. It's a long story.

Having MS + 2 daughters with autism + being an isolated atheist in an intolerant country, that looks like a load of issues indeed! (+ maybe the ones I don't know about). It looks like you're determined to succeed and you're doing well - even having just one autistic child would be beyond what I can cope with! The way I see it is, every individual has problems but I don't like thinking along the lines of "X's problems are worse than Y's" (unless the problems are extreme, such as someone starving in Africa or someone who is in constant pain) because: 1. It's very difficult to put a scale on such things, bearing in mind that each individual and each set of problems is different; 2. It detracts from thinking about the person in a compassionate way; and 3. It trivialises problems when they are invisible and difficult to understand, such as mine.

Have you got a link to a good website about MS? I didn't know anything about it until reading your post.

Take care

Daniel

Permalink Reply by Grace Fitzpatrick on September 6, 2010 at 12:29pm

My daughter has some advantages because she is exceptionally good looking. Grown ups give her some leeway because she is so attractive. However, little girls don't give her an inch. She's only seven and the cattiness has begun. *pull hair* she easily makes friends with little boys though. I've had more than one little boy tell me that she was their girlfriend. Unfortunately, she would like to be friends with the girls, but can't because they reject her. She also likes "boyish" things like trains, robots, astronomy, and everything to do with her favorite subject - science.

We've had trouble getting help for her because of her looks. We've been told "she's too pretty to have autism." Since when did pretty have anything to do with it? I've talked to her therapist about that. She says people give those with autism less leeway than other problems because they don't look "syndromey".

As for MS, I've been diagnosed for about 15 years, so I haven't looked up this information in awhile. The first few years you have it, you read everything, join support groups, get really angry and sometimes sad. Then as the years pass, you just accept it as part of life and move on. This is a link to the MS Foundation - http://www.msfocus.org/

Thank you for asking about it. It's kind of a weird topic sometimes. Since MS is degenerative, but not disfiguring, I also get the "but you look so good" remarks. It's annoying and it's a way to dismiss someone's real problems.

I have lost a good deal of the eyesight in my left eye and I have intermittent hearing loss. But it is loosing my sense of touch that is the hardest to deal with. I always tell the story of how I set my hand on a red hot burner and didn't know it until I looked down. Most people don't think about their fingertips that much, but I think about them a lot. I used to like to do needlework, but I have lost some motor skills and some of the sense of touch in my fingertips which makes holding a needle difficult. People don't think about it, but we 'see" a lot of our world through the tips of our fingers.

My aunt also has MS. She used to love to lay out and swim all day long. I asked her the other day if she still loved to swim and she said she couldn't stand the feel of the water all around her anymore. I understand, but i am sad she had to give up something she loved so much due to this disease.

But feeling sorry for yourself gets you nowhere you want to go.

I was born with dyslexia. It wasn't discovered until I was in 5th grade. I've gotten a lot of crap about it over the years - especially from supposedly educated people. I have been called "retarded" because I have it. I have thought long and hard about what would I do if I could magically be freed of it. I have decided I would not want to be free of it. It makes me unique. I literally see the world differently than other people. It is a part of what makes me - me. It was a burden to me at one time. It was a sticking point for other people to discredit me. But the most it has ever been is a challenge.

Autism is a challenge. I'm sure at times, it can be a great challenge. But you are stronger than autism. You will always have it, but you will not always be ruled by it. I am not ruled by dyslexia or MS. I have them and I cannot get rid of them. I can no longer work at a job because of MS, but I refuse to let MS take my life and happiness from me. I have the perspective of someone who has lived with her issues for a long time.

You may not be able to get everything you want in life, but through persistence and determination, you can at least get some or most of it. I put up with being called "retarded" for years, but I knew I was smart. I believed in myself. Now, I have two bachelor's and a master's degree. People call me very intelligent now. It was a hard path and it took me many years, but I have completely overcome the "dumb" label I lived with for so long. I still have dyslexia and MS. I still can't spell worth a hoot, but I am stronger than the conditions I live with... And so are you.

Permalink Reply by Daniel on September 10, 2010 at 12:43pm

She also likes "boyish" things like trains, robots, astronomy, and everything to do with her favorite subject - science.

So, if these interests persist, she'll later be thought of as homosexual whether or not she is. But her interest in Science could be the start of a rewarding career, couldn't it? (Yes, I know, she's only seven, and she has got lot of her life to enjoy before she gets there! I was just having visions.)

We've been told "she's too pretty to have autism." Since when did pretty have anything to do with it?

That's one piece of nonsense that I had never heard!

As for MS

Thank you for the link. I now understand what MS is, and what your experiences must be like. The similarities with autism strike me. What you said about your fingertips struck a chord. Most people don't realize how important it is to sense the world through your fingertips, do they? they don't even think about it. It's like autism. Most people don't have to be so careful all the time in social situations, and they don't even think of analysing the situations at all, whereas we have to do it all the time.
Has MS affected your ability to do your job? have you had to change jobs because of that, or ask for accommodations?

I have been called "retarded" because I have it. I have thought long and hard about what would I do if I could magically be freed of it.

My perspective about my autism is different, because it has caused, and is still causing me so much suffering. If it was possible to inject a chemical into my brain to rid me of my autism, I would be very glad to accept the cure! If I lived in an agrarian society I would probably feel differently, but in modern western society I think I would have a much happier life without autism.

you are stronger than autism. You will always have it, but you will not always be ruled by it.
You may not be able to get everything you want in life, but through persistence and determination, you can at least get some or most of it.

Oh yes, I realize that! I'm taking steps to get the life I want, e.g. I'm studying for a geology degree at the moment, but while I'm doing that I'm still having to put up with things that make my life pretty miserable. Also, as I'm becoming increasingly aware of myself and the world, and I realize that there are plenty of nice experiences I could have out there, it feels increasingly difficult to cope with the rubbish. There is light at the end of the tunnel, but it's so frustrating because it takes such a long time to get there!

Permalink Reply by Grace Fitzpatrick on September 10, 2010 at 11:02pm

I am no longer working or driving thanks to MS. If I could be rid of it, I would in heartbeat. I wish they'd stop screwing around stopping stem cell research all the time. I think it's my best hope for a cure.

I have often wondered if astronaut Alan Bean (the geologist) was an Aspie. All the other astronauts screwed around and really enjoyed being on the moon, but he kept his nose to the grindstone and his mind totally dedicated to his work. I have often wondered how many astronauts might have autism or Asperberger's. It's a very grueling, dedicated thing to do. There's not a lot of socializing or fun involved in it. And I have watched tons and tons of documentaries on them. I'm surrounded by space nuts.

Permalink Reply by Daniel on September 11, 2010 at 7:18am

Ah, so your MS is really disabling. I can see your perspective on this now, i.e. wishing for a cure but at the same time knowing that you'll have the disease all your life and fighting so as not to be ruled by it. I have the same perspective about my autism. It must be hard for you, especially considering the degenerative nature of the disease. I wish you all the best.

I also often think that this or that person is on the autism spectrum. Geology involves pure logic and no relationships with people, so I think it must attract people on the spectrum. On my course, most of the students and lecturers have autistic traits, and I think that there are a fair few who are on the spectrum, or close to the border betweem the spectrum and normal. I also think that Charles Darwin was on the spectrum. It's fascinating if you read about his life. He was approaching every issue scientifically. There is obviously the fact that he pursued purely logical evidence-based thinking about evolution, and about geological processes - he didn't let the orthodoxy of his time, or the feelings of members of his family, get in his way. Also, he listed the pros and cons of getting married, on two columns on a sheet of paper, and drew a conclusion from what he had listed. Once he had decided to get married, he was very wayward into doing something about it: he proposed to a woman immediately. There is also the fact that, although he enjoyed companionship, he spent a lot of time on his own too.

Permalink Reply by Grace Fitzpatrick on September 11, 2010 at 9:12am

I hadn't thought about Darwin. I have wondered about former astronaut Lisa Nowak. I wrote my master's thesis on radio astronomy and I have often thought that would be a field that attracts people on the spectrum. Also, it's an all night job. My kids have never slept at night. No matter what we do, they will not sleep at night. It used to be they barely slept at all. I refuse to drug them, so we are stuck with being up all night every night. I hate it. But I understand not sleeping at night or not sleeping much is an autism thing. *sigh*

Permalink Reply by Daniel on September 12, 2010 at 9:53am

I hadn't thought that night jobs would attract Aspies, but, thinking about it... yes, the peace and quiet would attract some of us, wouldn't it?

I find sleep difficult too. I can't stop thinking and worrying, and that stops me from going to sleep.