What is it like to have a child with Autism?

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My name is Laura and I am currently in college, majoring in special education. I am in a class called Working with Parents of Exceptional Children and I need input from parents on what life is really like having an Autistic child.

Hi Laura, and welcome.

There is a parents' forum here so if you have a look at the threads there that will give you a good idea of our many and varied experiences of being parents to autistic children. We are all different, and so are our children, so your question will get you a lot of information!

Maybe if you look at the parents' forum first, you'd be able to ask more specific questions relating to different areas, for example, school life, home life, sleep, diet, friendships etc. I personally would find it easier to provide information in response to a specific question and I suspect it would be easier for you to sift through and organise replies.

I can't tell you what it's like to have an autistic child, but I can tell you what it's like to be one. (At least my own unique flavour of autism.)

I could ask my Mom if she'd like to tell you something about her experience. She's pretty busy lately but she might want to talk to you about this.

being the parent of an autistic child can be very difficult, just ask my mother! being a single parent on less than minimum wage, raising a kid with Asperger's syndrome must have been very challenging, but she managed it and I turned out just fine! My childhood was difficult, but we pulled through it and I grew up to become the fine young man that I am today! I have had a university education and currently make a living as a musician and writer!

I hope to have children one day, and it is very likely that they will also have an autistic spectrum disorder like me (I have heard it is hereditary, i think my grandad also had the condition, he was a very eccentric man!) If my children are on the spectrum I will be a very understanding parent and give them the love and care that they deserve!

The thing you have to remember that this IS a spectrum and your question cannot be answered with one single voice..... Here is my very unique (as an ASD parent) perspective...

The other day I read on some parents board how the NOT KNOWING part is the hardest part about raising an ASD child. I was floored at that comment and now offer a unique perspective to this thought... I raised two young ladies into amazing adult women. My oldest is soon 29 years of age and my youngest is soon 27. They are both amazing, living on their own and my best supporters and friends.

My oldest came out of the womb screaming her head off and never shut up since. LOL! She was "in charge" from the moment of her first breath. Confident, strong and beautiful She started talking at a very, very young age and spoke complete stories before she was 2 entertaining adults everywhere we went. I dressed her in nice comfortable sweat suit outfits and she pushed those away at a very young age preferring to wear scratchy clothing.She often completely boggled my mind. One day, in her teens, she totally stumped me by demanding to learn about makeup. (After pondering what to do, I ended up sending her to my sister's house for lessons) She was always one of the most popular kids in school growing up, serving on boards (Sr class president) and hanging out with the "in" crowd.

My second came out of the womb silently. She was independent and introspective from her first breath. Beautiful, bright and with a dark force that challenged anyone daring to cross her the wrong way. She slept 12 or more hours a night every single night. She did not speak until she was nearly 3 years old. She banged her head to relax herself, wandered, puked all the time and never shunned the nice soft clothing I put her in. She and I just sort of "clicked". She did not require me to teach her about makeup or fashion because she dressed more practical. She was bullied throughout her school years and had a few geeky friends when she finally graduated.

As the girls became teenagers and young adults my NT child was the most worrisome for me. Perhaps it was because she was my first? I don't know but I do remember thinking that the worse part was that I did not know about her future. She was the one I had to worry who would fall into peer pressure and try drugs or be peer pressured into sexl. She was the one who I had to worry would want to drive fast and fancy cars. She was the one who had great lying skills. She had so many potential pitfalls placed on her by her need to "fit" into society that I had huge cause to worry. I spent many a night awake in fear for her and she required a great deal of support and guidance from me.

My baby... Well... she was pretty easy. The only worry I really had was how to get those mean bullies to leave her alone. After 10th grade that problem sort of took care of itself and I never had to really worry about her desire to conform to any societal norms. Afterall she marched to her own drummer. She was independent and strong and sought appropriate challenges without my guidance.

My point here peeps is that as parents NOT KNOWING really is the hardest part. This hardly applies to Autistic kids only and sometimes the autistic kids... well they are actually easier in some ways...

I have a 6 year old child with PDD-NOS.

Before diagnosis, I always thought that my son's behaviour was due to my own lack of parenting skills. I got all the nasty looks from people in the supermarket, bus, community center, etc. I would hear about other mums with children the same age talking about milestones such as talking, making friends, helping out, riding their bike, etc and would have nothing to share. These same mums would sometimes also give me judgmental looks. I gradually got more and more socially isolated.

When I tried to speak to my GP about the trouble I was having, she would also just say that I "just have to live with the screaming" until he learned.

The only reason I knew to take my son to a specialist was because I happened to meet a nice woman in the community whose own son was recently diagnosed with ASD. She saw some of the subtle signs with my son. She gently approached me and encouraged me to get further information and help. This was a very fortunate thing, because I got my son diagnosed just before his fourth birthday. I was eligible for funding (which only goes up to age 6 and is only retroactive to the actual date of diagnosis). If I did not get him diagnosed early - he would have lost all this funding which I could use to pay for things like Occupational Therapy, Behavioural Consultants, education for me regarding ASD, and interventionists.

Now that I had the funding - I had to go through all the various level of beaucracy to access it. I also had to cut through red tape to learn about and apply for disability tax credits, registered disability savings accounts and other benefits we might have access to. Sometimes I really believe that the Canadian government purposely makes it difficult to understand all the forms and paperwork to be able to apply for these things.

Now that my son is diagnosed, I have to be careful about sharing the information. People will ask whether I had my son vaccinated, "Yes, I did. If I didn't, I would have a son with Autism AND the measles!!"

My sister gave me a copy of one of Jenny McCarthy's BS books, and advised me to find a DAN (Defeat Autism Now) Doctor. I checked out the DAN doctors in my city. They charge a couple of thousand dollars for lab tests (not done in recognized labs, but only certain Nuturopathic Labs) and then charge astronomical fees for suggesting herbs and supplements and gluten free diets, etc. As a lark, I wrote one of the DAN doctors and asked that he only order some of the tests and that I only try some of the therapies as I wanted to work within my budget (I stressed that I was not looking for pro bono services and that I would pay his fees and for the necessary lab tests - I just wanted to prioritize them). I was never given the courtesy of a response. Nuff said. I guess there are enough naive and desperate parents who are willing to take 2nd mortgages on their homes for unproven treatment. Oh, and one of the DAN doctors recommended Reiki treatments for children with Autism (which she would give at $75 per hour!! !!). A little aside -when I was younger I actually took Healing Touch to the third level and two levels of Reiki as people said good things about it and I was curious. It's all a bunch of nonsense - trust me!!.

Anyways, I have people suggesting that I give my kid expensive supplements, not give my kid bread, cake or pasta, not give my kid milk and try all sorts of expensive quackery.

On the other hand, I also have people telling me that Autism is "just an excuse" and that it doesn't exist.

My son has been invited to all of three birthday parties since he has been diagnosed. My son is never invited to playdates (except for the other mum who has a son on the spectrum). I don't have much to talk to with other parents.

My husband and I are both professionally employed. We spend a lot of our money on ABI therapy (we are blessed with an excellent ABI worker). We don't go out much as a couple because of the cost of babysitting. When you have a child on the spectrum - you can't just have the neighbourhood teenager watch them for $6 per hour. Our babysitting fees are $17 per hour (we use my son's ABI therapist. I don't mind paying her this out-of-pocket because she is worth her weight in gold). On the other hand - we dont get out much and this isolates us socially even more.

As for ABI Therapists, I am blessed with my current one. I have had a few duds. I hired them, paid for their training and then some of them quit shortly thereafter. I had one horrible young woman come into my home for an interview. She admitted herself that she did not feel that she was a good match. She sent me and my Behavioural Consultants as assessment of my family, including a criticism of my housekeeping!! !!

This is all the yucky stuff.

The good stuff - I have become much, much less judgmental of others since having a child on the spectrum. I see a child throwing a tantrum in the store - I have some understanding and don't give "the stare". I see adults with disabilities and I feel connected to them to. I sought out and found community - including all the people on WrongPlanet.net. I have met so many understanding, compassionate people that my heart soars when I think of them.

So - what is it like having a child on the spectrum. For me, it was devestating, isolating and challenging. It means being different (not just my son, but me as well as I am different from other parents). It meant the opening of a whole new world.

If you were working with me, you would find me a little tired (being a full time working mother), a little raggedy (can't afford fancy clothes, manicures and hair cuts), my house is messy (I'm tired and my kids keep messing it up anyway). I'm a little skeptical (are you telling me the truth? Are you trying to sell me something? Are you judging me?). I get hung up on stuff like wanting my child included whenever possible, wanting my child to learn the best way he can and want to be included in decisions). I want interventions that actually work and don't want to waste precious time and money on nonsense (don't EVER quote Jenny McCarthy to me - EVER!! !). When I find a good ABI worker like I have - I have a good sense of humour, am flexible with her own personal schedule and easy going. I don't sweat the small stuff because there are so many other priorities that need attending to.

I know that this is a rambling reply - but it pretty much sums up my experience.

Cheers.

CR

I can tell you what it's like to be an aspie child too.

It sucks.

You always feel out of place, the littlest thing sets you off, you hardly care about anyone but yourself, your interests are almost always out of your age group, you waste all of your parents money on treatments and special schools that hardly work etc...

So, yeah.

Not one thing you said is true. At least not for me.

What were your experiences then? I'm sure you think Aspies are wonderful. But they aren't, they're huge burdens to everyone involved.

My mom had a hard time because I wasn't diagnosed. We lived in Germany when I was little, and they didn't know as much about autism as in the US (ironic, isn't it? Autism was discovered by Germans!). She thought that I behaved the way I did because I didn't have a father (he died when I was only two), or because I was rebellious or strong-willed. So she didn't really have a clue until 1995 when AS was first defined and autism started to include people who, like me, could talk at least some of the time. My mom, as an occupational therapist, knew about the new definition and worked with autistic kids.

But she was so afraid that the school system would label me and not give me any opportunities--I was very good at schoolwork, and precocious in reading and language--that she wouldn't get me diagnosed. And we had to muddle through until I was on my own, and not ready to be, and had to be hospitalized; and then I was finally diagnosed and got some answers.

So what was it like for my mom? I guess it was tough. When I was little I had constant tantrums... and by "little" I mean "until I was 17". She was often tired. I really think she could have used respite care; but without a diagnosis, that wasn't something she could get. Later on, though, I think it must have been easier than it was for parents of typical kids. My worst transgressions in my teen years were reading with a flashlight under the covers, not wanting to do the dishes, and having a messy room. My peers at the same time were having their first sexual experiences, getting arrested for vandalism, trying marijuana, and in one case attempting suicide. And I was at home, learning about relativity theory.

We're still friends, though I live far from home now. She's worried about me because I'm on disability and don't have a car; but I want so very much to be independent, and I have to keep reassuring her that I'm doing okay. I am; I know how to find my own help now. However disabled you are, if you can communicate what you want, then you can live a self-determined life; and that's what I'm doing. I'm making my own decisions.

So, I guess, the best I could say from observing my mom and thinking back on how I grew up is that raising a kid with autism is neither better nor worse than raising an NT kid. It's simply different, because the child is different, the relationship is different, and the world treats you differently. And different is okay.

Hi, my name is AmyF, and I'm going to go on a forum for aspies and tell them how much I dislike them.

Seriously, what's your problem? Judging by your posts, I'd say that you have many more issues than all of us here. You can be honest with me. What is bothering you? Why do you feel the need to do this?

kfisherx -
I can relate totally.
My older one (21) is NT and has forced me into finding some creative solutions and learning situations over time too (shopping and dance class are not my forte). The good part is she can explain social constructs to me somewhat and she helps me match my clothes Most of the time I don't really understand her constant need for people but I can respect that she needs the interaction. She seems to need an opinion poll every time she makes a decision.
My younger one (17) is a suspected Aspie, just like me and I find him much easier to deal with and understand most of the time. He is very clear on his future (music is his special interest) and how he will get there. He too went thru bullying and has come out the other side. Music, dancing, and acting has helped him to connect to people.
I worry about the older one to a much greater extent than the younger one. I know the younger one will be ok because of who he is inside and how he thinks. He is fortunate to have a special interest that bridges the gap with people and can provide a career. My NT one seems much more susceptible to influence from others. She has no idea what she wants to do with her life and doesn't stick with anything long enough to master it.
You are so right about the fear of the unknown.

I have to admit,, growing up was difficult but I had plenty of fun.

"Growing up was difficult, but I had a lot of fun."

I like that. Same here.

Hi, I'm SammichEater, I'm going to avoid explaining how aspies aren't burdens because I have no real defense against what this "person with issues" is saying.

I don't have any problems, I have no issues, besides the whole aspie thing. My life is wonderful, to be honest I think you might be deflecting your problems on to me. I do it because I want to express myself, plus it's fun here.

At least you're not denying it, you deserve a hug.