I have ASD. Worried about having a kid with ASD.

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I have ASD, at the more 'high functioning' end. I am in my early/mid 20s and I've begun thinking about the next stage of life, children etc.

To be brutally honest, I'm worried I would be likely to have a child with ASD if I had a genetic child. I have a younger brother who has severe learning difficulties. We finally got a diagnosis this year after being part of a study, and apparently he has a very very rare genetic disorder that the doctors said I have no risk of 'carrying', it's more a freak condition than inherited. However, the other children with his condition had several things in common, including a higher than average level of ASD traits, but of all the children, my brother had the most severe learning impairment, with most having milder learning difficulty.

Now, my grandfather on my mother's side has never been diagnosed but we all acknowledge to be on the spectrum. My cousin on my dad's side got diagnosed shortly after I did. My dad and his brothers have higher than average ASD traits as do my mother and her sister. Everyone diagnosed in the family have been of the 'high functioning' variety, but I have a suspicion, quite possibly entirely wrong, that the combination of this already higher than average genetic predisposition to ASD entwined with the genetic condition contributed to my brother's severity of learning difficulties. He is not on the spectrum but requires almost the exact same support and has a huge amount of ASD traits.

I love my brother incredibly, but I have also played a big part in caring for him since I was a child, and am aware that at some point in the future I could become his primary carer, as his condition is such that we have no idea how far he will develop. This is a fact I have known all my life and doesn't bother me that much, however, it is something I am focussing on when it comes to thinking about having children myself.

I have often thought of adoption as the route I would pick, as I have two adopted cousins and I see how important that is, however, I have wondered about maybe one day experiencing being pregnant etc.. My biggest fear though, is having another child like my brother, or a child with ASD with more complex needs.

I've often thought when it comes to adoption I would be quite happy adopting a child with difficulties/disability, in fact I think I would be very good at it, but the diffrence is, with genetic children, you don't know what you're getting. Part of me wants to do that journey once right from the beginning, pregnancy, birth etc., but although I would make it work, part of me just does not want another child who could be dependant on me for my entire life.

It sounds harsh, but it's my situation.
As such, I'm looking for advice from anyone on the spectrum who is a parent or whose family have a high concentration of ASD- were your children similar to you in 'functioning'/needs or was there great variety?

Thanks.

There are always kids out there who would love to be adopted by a caring parent like you.

Don't have a kid just for the "experience of being pregnant."

If you're open for adoption, then I'd go for that option.

Not every Spectrum parent produces Spectrum children, though your family seems to have some abundance of Spectrum features.

I, myself, am the only one in my extended family who has Spectrum features.

My family is pretty spectrummy, but my kids are the only ones I know of with formal diagnoses.

It's hard to know what to tell you. Before my kids, I didn't realize we were a spectrummy group. I only understood autism in it's more severe forms, and although my daughter was moderately impaired as a toddler, she isn't anymore and passes for the most part. So, I didn't know that I would have a higher than average chance of having a kid on the spectrum, let alone 2.

I do get the feeling of wanting to experience pregnancy and childbirth. If I am to be honest, there are few things I hate more in life than being pregnant, but giving birth--for me--was nothing short of miraculous. It is an experience that I would never give back or change in any way. I found it transformative. That being said, I do not think it is a necessary part of being a mother. My sister has had a biological child, but she also has an adopted child, and she reports that she loves them just the same and I have no reason to doubt what she says. So I agree with Kraftie that it may not be wise to have your own kid just to experience pregnancy and childbirth. You can bond just as intensely with a child that is not born of your womb.

The one thing I would caution you to think about more is your thought that you don't know what you are getting with genetic children. You said that in the context of adopting a child with special needs, so I take it that you believe you "know what you are getting." My sister's adopted child has DS. She knew this from the time he was still in the womb, so she knew what she was getting. The thing is, he happens to be a kid with DS with pretty much every complication a kid with DS could possibly have. He is very fragile. I do not think their life is the life she imagined when deciding she wanted to adopt a baby with DS.

With kids, you never really know what you are getting. I often am heartbroken at the thought that one day a mother may be able to genetically screen for kids like mine in utero, and that she might choose to terminate the pregnancy out of fear of what that could mean. My son is actually an EASY kid. Granted, he was extremely difficult until about the age of 8 or 9, and I mean extremely. But he is 15 now and the only thing that would make him easier is if he had stronger executive functioning skills. He has NVLD and ADHD, but he is super mellow in temperament. He is smart and funny. He is very rule abiding, but not rigid. Trustworthy. Loyal. Kindhearted. Forgiving. Justice oriented. Moral. He is not what one would "expect" from a kid with his neurological makeup. I am not saying there are not other people like him on the spectrum. But he is not what I imagine a mother hearing the news that the fetus she is carrying is on the spectrum would picture.

You don't know what you will get with any kid. And you don't know how severe or mild any condition might end up being. My son looked like he was going to be much more severely impaired than he is. So did my daughter. My sister's son has ended up being way more impacted by his DS than they had ever anticipated.

Having your own biological kids is a wonderful thing. Giving a loving home to a child who may not otherwise have that option is also a wonderful thing. Kids are wonderful things. They add a dimension to your life that I don't think can be obtained anywhere else. And I don't think it matters if they physically came from you or not.

I will offer you this....to start what I have learned since May 2016....

Oldest son dx'ed ASD 2E....after listening to the Dr. describe his evaluation results I say to myself, that sounds a lot like me. Prior to this had no idea what Asperger's was. Call and let my brother know, he proceeds to tell me his son (my nephew) was dx'ed ASD back around 2007 and never told me. I asked him if he identified with any of the characteristics of Asperger's and he said yes but never pursued a dx. I read some more....come across Tony Atwood's "The Complete Guide for Asperger's Syndrome" and relate to about 95% of the book. I start the process of getting my own evaluation, and Today I was dx'ed ASD. To add to all of this my youngest son shows signs of being on the spectrum as well. Knowing what I know now, I can look at my mother and see where she would fit the mold of AS as well.

For the rest, I have gone back and copied a post that I left to similar thread a couple months back to speak to the parenting difficulties.

So basically for the past 6 years my wife and I have been in a constant churn. In retrospect I did not know that what I was suffering from was AS but (nor my son for that matter) but imagine all the things that you fear about having a child and then live those fears most every day. For years I have been saying that there is no way that parenting can be this hard, but in reality it has been. My younger son (3.5 yrs) has a rare disease called F.P.I.E.S (Food Protein Induced Enterocolitis Syndrome) and shows some signs that he might be on the spectrum as well and that has all added to the mix and stress of things.

Raising these two boys has by far been the hardest thing that I have ever had to do, emotionally and physically. The reality of my environment is chaotic. If not from the two little ones having a go at each other, then just the fact that there are three other people I have to share the space with. Order is a long lost dream. I have woken up almost every morning to one my kids crying, or crying out for Mom; most days I am stressed and deregulated before my feet even hit the floor. For me, my environment has been a trigger for my depression, and it has all become a vicious cycle. Luckily for my wife and I we have had the resources to seek professional help for ourselves, and both of our children. I am grateful that we know about my son early on, so that we can try and put into place a good framework for him to be able to navigate his life. As for me, I am glad to know why my life has been so challenging and am making decisions to hopefully make what's left of it more enjoyable.

If there is a silver lining in all of this...I would have to say once we get past the formative years (because I feel I have been and will continue to be 3 steps behind) I do think that I will be very well suited to be a good parent to both boys. If my younger one falls on the spectrum at some point...well he'll be in good company. At least at that point in the parenting journey I will be able to share my ups and downs with hopes that they can learn from it and avoid a lot of what I have had to endure.

In closing here...would I have ever chosen this set of circumstances...no, they truly are my worst nightmare. As my wife and I call it "the perfect storm" Regardless of what I would have chosen this is my reality and the good news is that this reality can always be influenced in a positive way. With that said, the Aspie side of me longs for my old life back, where things were where I left them, I could spend my time as I wanted, I didn't have to defend my personal space, I didn't have to wear headphones around the house, and I could have an enjoyable dinner out. (just to name a few) It honestly has brought my wife and I to the brink, and we are still there, reading, researching and reaching out with hopes of surviving it all. At the end of the day, you know yourself best. I think people that fear having children have that fear for a reason. I know for me it was a gut feeling, something that I always new did not appeal to me. But then life happens (literally and figuratively) and your in it.

I'm not sure when you think the next stage of your life will start or how you see a family timeline developing for yourself but given the family history you have described, I would say take a strong look at the resources you have available to you and your partner for raising a family. A perfect little boy or girl is hard enough to raise these days under ideal circumstances. Imagine the circumstances if there were to be anything less than ideal. Not saying it can't be done. But from someone that is 6 years into the process, I can offer you honest testimony that it is (and I suspect will continue to be) very difficult. I hope this helps. I hope that you find the perspective you are looking for. Kind Regards. Shark

Thanks for sharing. But I must offer my own opposite case.

Precisely because I learned I was on the spectrum, raising my daughter was a breeze. I scratched my head at why people had problem communicating with my daughter. She had speech delay. But I communicated with her by talking to her...through pictures. That's my natural way of communicating, anyway. She learned to read early, taught herself to read cursive at age of 2. When I took her into our school district for evaluation with the speech specialist, in the middle of my conversation with the teacher, she started to mumble some words. The teacher and I looked at where she was looking at, and she was reading the lyrics of "Five Little Ducks" from the picture on the wall. Ha! She is 8 years old, now. Last night I helped with her homework, and I am still impressed at her reading speed. She could "block read" and picked out the 8 words with wrong spelling almost instantly. Written English was her first language, not spoken English. She recently taught herself to play electronic piano keyboard with both hands. Overall, she is cute, smart, friendly, social. I put her in front of your eyes and you won't be able to tell she is on the spectrum, unless you spend a long time with her.

I think in pictures. I used to think 100% in pictures, until my late teenage years. I spoke 3 languages (now I speak 5.5 languages). In my high school, my friends asked me: in what language do you think? And all of a sudden I was lost...why would anybody need a language to think? I couldn't answer their question. I told them, no, I didn't use any language to think. I just "thought." It's only much later that I became a "verbal thinker." It's only much later that I came to understand my friends' question.

My son's case was different. He was also on the spectrum. Well, I told myself, this is going to be easy, since I had such an easy time with my daughter. Ha ha. Nope. He did not look at my pictures, at all. He was hyperactive, couldn't stand still for 2 seconds. It was like watching a ping-pong ball bouncing around the house, non-stop. I couldn't communicate with him. He started early intervention around 1.5 year of age (because of my daughter and history of autism in other two nephews). But, before he was 2.5 years old, I just did not know how to communicate with him. It was frustrating. My son and I grew very far apart. I still remember my wife scolding at me: "He is your son, do you even realize that!?"

That all changed when my son was 2.5 years old. I was discussing some issues at work, and I was thinking about that line of subject. And I suddenly recalled an on-line discussion I had from a few years back regarding "Aspect Oriented Programming" (AOP) , where I helped some folks understand this concept by borrowing an analogy from mathematics, from the so-called "Fourier Transforms." One night, I sat in the TV room, thinking about all kinds of things, about AOP, about how different my children were. To make a long story short, it was my light-bulb moment. Ah ha, I told myself, my son was the Fourier Transform of my daughter. So, instead of communicating with him by using pictures (which were static), I should communicate with him through videos (which were dynamic). I started to make cartoonish video clips for my son. In a few days, he learned to call me "Papa," which we and the ABA people have been trying for the longest time without success. He learned to focus on static pictures, he learned to read, learned to say "no." Before he was 3 years old, he was already reading Bob books. My son and I became close friends. When my son was 2.5 years old, I became worry-free. Yes, we went through all issues typical to all autistic children. But it was like solving mathematical equations. One by one, all the problems were solved. Because I had a "mathematical" model about autism now inside my head, I solved every single issue. I remember I told my wife: "autism is solved," when my son was 2.5 years old. (Granted, my understanding about autism, using quantum field renormalization, happened sometime later.) Let's see, my son is 7 years old, now. So it's been 4.5 years. I basically foresaw everything that happened in these 4.5 years, when my son was 2.5 years old. My son is right on track of my expectations. It has been a smooth sailing. Last week when I dropped him at school, I saw him talking to a cute little girl in the playground. The girl was from a different class. Although I explicitly told the school's teacher and principal that I had zero expectation about my son's academic performance (I am always so afraid that he would stand up and walk around in classroom), the teacher told me that my son actually was doing all the same work as his peers. Furthermore, the teacher told me that Ivan was actually way above his peers. I told her, perhaps it was because my wife worked with Ivan on some 1st grade workbook during summer. The teacher looked at me with those disbelieving eyes, and said, no no no, she said, maybe, but whatever your wife taught Ivan, it was way above 1st grade. She put her hand first at her hip level, said that the school was expecting Ivan to be at that level, and then put her hand above her eyebrows, and said that was what she was seeing in Ivan now. Ha!

So, it has been fun raising both of our kids. Take my wife's word. She is neurotypical. She says, if she had a choice to do it all over again, she would still choose to raise autistic children. It's so much more fun. They always surprise you now and then. I can't remember the number of times we've told each other: "this is heaven."

I'm in this dilemma too. I so badly want to be a mum, and I am happily settled in a relationship. But I'm feared that I might pass on my ASD to my child, and I don't want to bring a child with ASD or with any neurological challenges into this world.
Most Aspie people on WP will tell me that I will be a bad parent if I do not want my child to be on the spectrum.
They also say that NT children can be this and that and all the rest of it, but I look at everybody I know who have young NT children and think that things will be a lot more challenging if their children were autistic or had some other neurological disability. Most issues that come with having NT children are rather similar. NT children mostly adapt to their home environment and upbringing, and so it is much easier to have happy children if you bring them up in a secure home.
Autistic children, however, are often harder to keep happy, and sometimes it's hard to find the right kind of help and you can feel alone, while watching your child's NT peers reach their milestones and make friends at school.

Even if you weren't on the spectrum, there's always a chance the child could be on the spectrum, have cerebral palsy, have Down syndrome, or any other disability.

When you choose to be a parent, you take this risk because you know you'll love the child regardless of the challenges he or she might have. Children with disabilities, if properly cared for, can be happy.