My daughter was diagnosed with ASD.

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My one and only daughter is now three years old, going four next year. She doesn't talk, she mostly sing children and can hold the tune, but the words just don't come out, she seems to make up her own.
She is healthy, physically fit and strong like her dad, cute as a button and smart like her mom. But she definitely seems to live in a parallel world.
My wife is very distraught about the fact that our daughter does not express herself with words like other children her age, and cannot tell us when she needs something, or if something happened to her in school. We pretty much have to guess. My wife seems to see our daughter's ASD diagnosis as a painful curse she brought upon the little one "somehow". That discussion always end up with me chinding her for
I am more laid back by nature, but still feel sad and at the same time hopeful when I think of my daughter's future. When will she start communicating with us in terms we can understand and respond appropriately to? Will she be able to adapt to the world around her and be independent? Will people take advantage of her once her mother and I are dead?
I joined this site to have a peek at the future waiting for her, perhaps to get some kind of assurance that she will not be alone and vulnerable when she grows up.
If you are a parent of a child like mine, I would like to hear what you have to say about raising an ASD kid. If you are autistic, I would like to hear about your experience of life, and your level of satisfaction with it.

Well, lemme be blunt here: This is the kind of situation that makes me pretty mad. Not at you or your wife or your daughter, but at the so-called "awareness campaigns" that do nothing but spread pity and fear of autism. You've seen 'em, right? Yeah. Those things. They suck, and they're not true. They're skewing the reality to the negative side just so they can get money. And your family shouldn't have to deal with that crap. You've got a beautiful, smart, wonderful daughter who happens to be autistic. You have a name for why she's different; that name will help you get her some good education and therapy so that she can learn useful skills and connect better with the people around her. It's not a curse and it's not a death sentence.

I'm autistic. I'm happy with who I am. I wouldn't change it. I won't deny that my life can sometimes be difficult; and I won't deny that there are problems I face that neurotypicals don't. But there are good parts, too. I notice the little details in the world--sun through the leaves, reflections in a polished glass bead, the tiny sounds my cat makes when she sleeps. I don't get hammered by peer pressure like typical folks do, and with my perspective from the outside of society I've learned a lot about how to accept and understand people who are different from me. I can fall in love with a subject and learn everything about it; and I think in an orderly, logical way that makes me a good scientist.

Autism means your daughter will have a life that's different from most people's. But it won't be inferior. Different is okay. Really it is. I'm not just putting a brave face on it; like I said, some of it sucks. But that's true of any kind of life--there are good things and bad things in it; but in the end, it's worth it.

When will she learn to communicate better? Well, she's probably learning right now. Autistic kids do that--they learn. It can be slower; or it can be in jumps and starts; or it can just be atypical; but we do learn. Some kids learn how to use signs or pictures to communicate first, and then speech; others are just a little slower with speech; some learn to speak on time, but have problems with communication anyway.

You can teach her how to advocate for herself. That's one of the most important lessons any autistic person can learn. At this age, all that means is that she knows she doesn't have to take it if somebody treats her badly. As she grows, she'll need to learn things like how to arrange accommodations, how to get help when she doesn't know how to do something, or how to tell when someone's treating her badly in a more subtle way. Those are important things to learn. Sometimes, professionals will try to make autistic people compliant and easy to "work with"; but don't let them do that. Make sure that she knows, always, that what she thinks and feels is important. And if the only way she can protest is by running away or by yelling or by curling up and not paying attention, then the professionals need to respect that. That's communication. Her behavior itself is her best way of communication, right now, because she doesn't have words.

I'm 28 years old and I'm living on my own. People like me--with all disabilities, not just autism--are fighting for the rights of disabled people like your daughter to be treated with respect, to make their own decisions, and to have equal opportunities at school and at work. By the time your daughter is my age, it will be easier for her than it was for me. Look into the disability rights movement--they can always use strong allies. Talk to the parents in your area, about how to get the school system to teach her what she needs to know.

I can't tell you whether she'll be independent; I can't tell you whether she'll escape abuse, or how long it will take her to learn to communicate. She's an individual and autistic development is notoriously unpredictable. What I can tell you is that things will get better for disabled people in the future, both for those who are independent and those who need help; and that life with autism is not a tragedy, just a different sort of life.

Coucou lapinou. :p

Huge +1 to Callista. Every autistics is different, but by getting a diag at age 3, you can help her, so she will probably adapt far better than without help and so... people will probably less try to take advantage on her. Her difference doesn't mean she will never be able to do anything... there's a lot of people here to say that it's wrong :p

And about my satisfaction, I wouldn't change. Firstly because "curing" autism mean deleting your brain and putting another one, working in a different way... and because I'm happy as I am. Same as Callista, I don't try to say everything is right, but autism is one of those very rare handicaps which are mostly labeled like that because of the society, and not of it himself, if you see what I mean. putting an "happy face" on it wouldn't be right, but putting a "sad face" on it wouldn't be right neither. Though I'm more into the "happy face"

What kind of autism does she have exactly ? Hum, I mean... by asd, do you mean autism more in the Kanner way, or more in the high-functionning/Aspergers ?

[Moved from General Autism Discussion to Parents' Discussion]

Well said, Callista!

Thank you all for your input, especially Callista for her bluntness. You are blessed.
I will do my best to make sure my daughter has a happy childhood and a fair shot at life. I did not know there were such "awareness campaigns". What are they supposed to make folks aware of?
I am more interested in knowing what my wife and I can do that will make a difference for the better in our child's life.
Thank you again.

It's not possible to predict accurately the future of anyone, whether they have Autism or not. However, there are now treatments available that can help, especially when started young. And although Autism spectrum disorders are not curable, neither are they the end of the world type disasters. My life isn't great, but I am better off than many other people, and I appreciate the good things in my life, including that I live alone. I don't do good living with others, and prefer living alone, but that is not the case with all of us. I did notice what you said about how your wife has been taking this. It sounds as though she is equating this with mental retardation. Autism spectrum disorders are not mental retardation! Yes, occasionally some of us have that along with Autism, but that also happens occasionally to non Autistic people, but most Autistics are not mentally ret*d. Many of us are slow to speak, and to mature in emotional ways, and many of us never become proficient at socializing, but that is not in itself mental retardation. You need to have a psych doc explain Asperger's and Autism in general to your wife. You also mentioned that your daughter was diagnosed as being on the Asperger's part of the spectrum. Non verbal children with Asperger's usually do become verbal over time. There is no set time for this to occur though, but treatments are available that can help with that and with her other disorder related problems.

Please do look into the treatment programs for your daughter and definitely have the psych doc do a better job of explaining Asperger's to your wife. I also suggest you have her log onto this web site, so she can learn from and interact with us. I have Asperger's Syndrome, Avoident Personality Disorder, and Executive Function Disorder, and the problems that go with these conditions. However, I am definitely not ret*d, and most of my research indicates that most other Autistics are also not ret*d.

P.S. To those who object to my use of the word ret*d, I only use it in the clinical sense and don't make a habit of calling people names with it, and by the way, others called me that many times when I was growing up because of my being different. For times when I want to label someone non ret*d who has done something really stupid, I prefer the term Village Idiot. I am quite fed up with so called "politically correct" speech, which always has people walking on verbal eggs, and getting mad over trivial stuff. The terms "ret*d" or "mentally ret*d" were common usage for that condition when I was growing up, and I see no need to change my own fair usage vocabulary just because someone else wants to take offence over it. Being Aspie I am less susceptible to peer pressure, including that of the PC crowd. Don't like my fair usage of such terms? Tough!

hi lapinmort, I am also a dad who has a daughter on the spectrum. She was diagnosed last year just after she turned 3, she will be 4 next month and still does not say a word. I just have a few things to say from a parent's point of view.

* Do not treat her any differently now that she has been diagnosed. as in, do not give into everything just because you feel the autism is making her do it. Just like any other kid, she will need some form of discipline. in other words, raise her like you would if you didn't know she had autism.

* As I already mentioned, Not everything she does is related to Autism. You will most probably google every little thing she does and end up getting advice from people who will blame it on autism. Please do not fall for this as every autistic person is different so its not necessarily true that autism is causing it.

* Sometimes not easy for every parent from a financial point of view but try and give her the best therapy you can afford and as much as you can. Early intervention does make a difference!

* Do not get her on a ton of medications, if you are not happy with what your Dr is giving you, get a second or third opinion. medication is not always the answer.

* Just because society or some autistic people calling themselves disabled, it doe not mean your child is disabled. she is just differently-abled.

* and finally, having a child with autism does not mean you or your wife have done anything wrong. Because your wife is not coping well she needs a good support system around her. Once she see's your daughter improving her worries will soon dissapear.

Please keep us posted on her progress and feel free to contact me if you need any info on what we are doing with our daughter.

Wow I am so glad I read this post my son was diagnosed in third grade although we knew in second it takes awhile sometimes times he has high functioning Aspergers . I understand the diagnosis issue at first It almost is like you are morning the loss of your child but in reality they are they same child they were before but now with a label, which is not all bad before he was diagnosed we were just guessing how to help him and quite frankly it was not going well after the diagnosis it was like some one gave us the keys to the car and things started working its definitly not perfect but he is now in 6th grade and I would not trade my wonderful sweet loving smart Young man for anything in the world ! What I did to combat the diagnisis depression thing. was to read everything I could get my hands on about the subject which helped me so much bieng educated I know my right I know how to get what we need (somtimes hard to figure that one out )An I also know its not a death sentance there is a child in there getting them to focus and come out of thier world is a challenge but it is definitly possible ! There are some awsome books the names are escaping me I remember the jenny mcarthy one maybe the rest of you have some titles that could I also got on a site like this I lost the address then found this one later anyway it helped me to see what others were going through and compare to what was happening to me and gave me a ton of help and moral support.

I have to say Callista I loved what you wrote my son is awsome and I would not change him for the world you sound similar ! that was some awesome advise you gave him. I just wanted to also mention none of us know what the future holds even for the Neuro typical, but my son at 12 I belive he will get where he needs to be in life oh yes there are challenges but we all have challenges you just have to belive and never give up ! !!

I also have Autism. I will tell you things in a little bit, but first:

anouther awesome forum is forums.delphiforums.com and for the most part I treat my just like my NT girl but try to teach him those things that he does not get . like that thier are shades of grey not just right and wrong or little white lies help with peoples fellings etc one last thing I have known NT children that did not talk at that age its not usual it does happen you say she sings are they real words ?

I would like to add that 3 is still really young and so even with an ASD diagnosis you really do not know much about how your child will turn out. When my son first went to school he told me nothing about his day. I would ask him and just get non sequiturs. He didn't even tell me when they had a unit on his special interest. I did not find out until I got the resultant art work.

He is seven now, and I do get much more information. If I ask him questions, I usually get answers that are on point and he will volunteer things -- mostly complaints , but things he found interesting, too. He went from hardly talking at school. to talking about his special interests all the time. Now we have the challenge of getting him to understand when to talk and when he should be quiet and listen. That is par, too. When they learn one skill they often have to learn how to manage or channel it.

None of us are seers, and so no one can tell you for sure what will happen. I don't know with my own child, either. The main thing is to love them, and help them, and to understand them, the best you can. You have to get a gauge on what they can do so you can be realistic in your expectations, but also help them reach their potential. You'll get a better feel for that as you go. I learn new things about my son, everyday. Honestly, at this point. especially being Aspie myself, it is hard to imagine not having a spectrum kid. There is a lot that is fun and fascinating about how they think. I think it is a good thing.

Your wife (especially if she is NT) might be mourning the child she thought she'd have. It is very normal, and it does not mean she won't adjust and find out that the child she has is perfect in a unique way. It takes time, especially as others have stated with the scary not necessarily accurate information that floats around.