An open letter to the father of my son with HF Autism...

Post Reply New Topic

An Open Letter to the Father of my son with HF Autism...

When you called me today and asked me if I had told our son of his diagnosis of High Functioning Autism (formerly Asperger's Syndrome) and said I should not tell him it hurt me.

It hurt that you would think me telling him would make him feel disabled (your words). Do you know why it hurt me?

It hurt because I know it is your own feelings, not his. It hurt because you feel so little of our sons ability to deal with it. It hurt me because it showed how you feel he is disabled when he does not feel that way.

You were not there all the times I had dealt with his meltdowns and how I saw the confusion in his eyes. If you were perhaps you would have wanted for him to gain some clarity of what he has been through.

You were not the one trying to get him to use toothpaste and watching him gag on the foam it would produce. If you were maybe you would have wanted to help find one he could deal with even if it was a waste of money.

You were not there the times I would try to wash his hair and he would scream saying the shampoo felt like it was burning. If you were maybe you would have understood why he came to your home for the weekend with dirty hair.

You were not there the times I had to circle the school before he had his diagnosis because he would run away so much and they could not deal with him with no supports in place. If you were maybe you would realize why I feel he needs to learn about where he is and always know about his surroundings and why we walked so many places while you drove him in your car.

You were not there all the times he asked me so many questions which I always did my best to answer with as many theories as I could. If you were maybe he would ask you things now instead of keeping them bottled up inside because he knows you won’t try to help him figure things out for himself, you will just give him your opinion because as you say “children do what their parents tell them to”.

You were not there the times I felt like giving up. If you were maybe you would have reached out to me, instead of putting me down. It was not easy for me in the early days and it took 6 years to get a diagnosis, a lot can happen over 6 years.

In six years I have watched our son blossom into a wonderful boy who is very thoughtful and loving. He is smart and funny. He is learning to make friends.

I have helped him learn to ride a two wheeler after letting him have an adult three wheeler (against your wishes) in a matter of months.

He is just now starting to understand why I got so frustrated with him at times, when you kept saying he was normal and I could not see it. After all you only had him on the occasional weekend for fun fun fun!

I wished so many times I could have been in your shoes, going to work all week and seeing him only on weekends with not having to deal with the day to day troubles. Maybe then I could have blamed you also as you have blamed me all these years.

After you called me, I asked our son if he would rather have not been told of what he has. If he felt it would have been easier on him to remain in the dark about why he used to get so confused and frustrated with things the other kids had no issues with. He said no, he is glad I told him because now he can understand and deal with it. He knows it won’t always be easy for him and it will be a life long learning experience that he will have to work on. And he is OK with that.

Do you know why he is OK with that? Because over the years I have done my best to try and help him understand the things that he used to wonder about, the things that used to trouble him.

You say he is so well behaved and so polite now. You tell me he listens and helps out now. You tell me how easy it is now to deal with him. Do you ever wonder how he got to this point?

Some days it is still hard for me, and you don’t have those days with him now. Sometimes I think of giving up still and letting you have him full time so you can walk in my shoes for awhile. But I can’t walk away because I know he still has years ahead of him in which you would not be able to fill my shoes. I wish I could trust you to help him on his path, but I can’t.

I think that hurts me most of all.

Even parents who are present every day can have denial issues. Be glad you don't have to fight your son's father every single day. Not trying to diminish your experiences, just trying to help you see a silver lining.

I understand your point also. The father now has our older son living with him, and I do have to fight with him on a regular basis for him to take care of him due to his denial issues about his parenting choices. It has got to the point now finally that the older son is learning to tell his dad about the concerns I have had for years and I am learning to step back, unfortunately so far the denial is still there. I can not have the older son due to many reasons much of which I brought on myself by how I treated him when I was trying to protect our younger son from his outbursts that reminded me of how his father treated me.

Thank you for responding and I hope you can learn to help your spouse see what is going on. It is never easy when dealing with parents in denial. I'm not sure of your situation, but if your child is able to find his own words to tell your spouse maybe then they will learn to listen.

I told my daughter about autism and her being autistic, at her 8th birthday. I wrote a letter to her, and sat down and read the letter to her, on two occasions. She focused on correcting my grammar and spelling mistakes. Ha. But she did understand 100% my letter. In my letter I told her that being autistic is something to be proud of. I also told her that she should free feel to talk to anyone about autism and about her personal experience, but that there was no need for her to take initiative in telling people that she was autistic.

It helps children to understand themselves that they are autistic, so that they know how to handle stressful situations in the future. They need to know that their sensory signals are more intense, so that reality may not be as bad as they perceive. They also will able to learn to look at positive side of life, and get themselves out of their anxiety.

So, it's a good thing to let your son about autism. BUT, you have to make sure to make him feel proud about himself being autistic. Autistic people have more powerful brains. To me, it's a feature, not a bug.

All that being said, the gender ratio of autistic people is usually placed at 5 boys vs. 1 girl. Interestingly, the gender ratio (at least in the US) of STEM bachelor's degrees in college education is also 5 boys vs. 1 girl. Autism is a male-dominated issue. That means, as you may not be comfortable to accept, fathers do hold the key to the development of their autistic children. Yeah, most fathers probably are not even aware of that. Let me explain a bit.

I have shown very often something I call the Connected Development Graph in this forum.



Without going into all the details, basically, I solved my son's booster-seat changing and paper-hat wearing problems when he turned 6 years old. But when I looked back at it, the key to solving these problems can be traced back to his passion for elevators, and to the fact that I started to make personalized animated video clips for him, when he was 2.5 years old.

You will still see me taking my son to elevator rides (he is 6 years old today). My son wrote his first computer program (in Python) when he was 5 years old. I also introduced him to building electronic circuits. Also got him an internal combustion engine model. Two days ago I made a poster for his kindergarten graduation speech, with his stick figure drawings for each sentence of the speech. I had to take pictures of his drawings, and use the GIMP application to clean up the images, and then add in the typed sentences, one per drawing.

What I mean is, from understanding my autistic children, to helping them to develop, it's never an "if... then..." type of solution. In the Connected Development Chart, if you applied that approach, you will never find the right solution, because you will be scouring the very top layer of issues, without being able to see the root and proper route of developing your children.

You may want to check out DieselDucy on YouTube, or just google for him. Big hero in autism community. All he does is taking children to elevator rides and making video clips about elevators. Somehow, I just haven't found any mother that comes close in charisma to autistic children.

Trust me, I have seen more than enough broken families with children on the spectrum. But if you pause to think about it, could it be that the fathers themselves are also on the spectrum, therefore they are not easy to communicate to?

It takes an autistic person to understand another autistic person. That's the motto of my wife. I always tell my daughter that we are like twins, with the only difference that she is younger and cuter. Truly, with her, I don't even need to think. I know exactly how she feels, what she thinks and why she behaves the way she behaves.

My point is, if you can get used to your son's autism, you can probably also get used to his father. Fathers do have a role to play. They may not know about it, but they do have an important role to play, once they figure it out. Before my son was 2.5 years old, I was so distant from my son, I couldn't understand him, at all. My wife had to tell me once: "do you even realize that he is your son?" But once I figured it all out, my son just started to develop, really fast. Don't present your son's autism as behavior issues to his father. Present it as a mathematical equation. Truly, you may laugh, but I really reviewed Fourier Transform equations from my calculus classes, before I came to understand my son. Guys like technical stuff. So approach them that way.

I told our son about his ADHD as soon as I knew for sure that's what it was (it took two identical opinions plus hubby and MIL to get me to believe it wasn't autism). He was barely six years old.

My reasoning?? He already knew he wasn't like the other kids. He was already getting bullied for his impulsive behavior (blurting out answers and crying) and inattention (getting lost in class). He had a right to know why. He wanted to know why. I needed a lexicon to talk to him. And, frankly, if a person is going to be saddled with an atypical brain, they deserve to know what kind of operating system they're working with so they can be taught to utilize it properly. An autistic brain does not work like an ADHD brain does not work like a dyslexic brain does not work like an NT brain. They all have great strengths that can be built on, they all have weaknesses that can be worked around-- but both the owner and the instructors need to know the system they're working with.

So I told him. It worked out OK. At almost 9, he's happy and healthy and getting a pretty good grip on stuff he needs to watch out for. Without medication, he's an A/B student, at least for now (I figure the next big challenge comes when he starts changing classes). The only behavioral issue we've had this year was using profanity in the boys' bathroom-- I consider that very mild, remembering what went down in the girls' room when I was in third grade. He still has issues with rushing through his work and binge-watching Minecraft mods on YouTube. We're still losing the fight with volume control (it's not even noon and I'm holed up in my room because they're off school today and their precious little voices are causing me agonizing pain). He's still not careful to keep a polite and pleasant tone in his voice-- whatever he feels, it's clear enough that I can hear it.

I'm not so sure I ever want to change that last one, though. And the rest of them are minor enough that we can keep working on it over time.

Final thought-- there was no diagnosis to tell me about. I grew up being told I was normal because they thought I was.

And I knew full well, by the time I entered kindergarten, that there was something wrong with me. It just took until I was nineteen to find out what it was-- and then being proved right was emotionally devastating. If you can teach them to deal with the stigma, it's better to know, and to grow up literally with that knowledge.

I am sorry, AlienAura, that your ex is so unaware of what it takes for an ASD child to truly succeed, and all the work it takes to help them get there.

Yes, my empathizes also. That must be painful and infuriating. I got so caught up in trying to illustrate that you ARE doing the right thing that I forgot to say that.

Don't give up that fight. Your child needs you.

Thank you DW_mom_ I appreciate the understanding.

BuyerBeware You did not have to say it, I felt it in your post;)

eikonabridge I do see a few signs of Asperger's in his father, but I see many more similarities in my own father and brother to my son. In getting the diagnosis for my son, the Doctors believe my father and possibly my brother have it and possibly myself. We are looking to have me formally tested since it is harder to see in women, I believe it is why I was able to get him to where he is now, because I do understand him so well, perhaps in his early years my own distance I had with my son may have contributed it originally. It was after I started to learn about it and was able to make the connections that I was able to really see what he needed.

And I know that fathers play an important role and that is exactly why I have encouraged their relationship all these years against my sons wishes early on. I still feel his father is in denial and I honestly don't think he will ever get out of it as he prefers to blame me instead of looking at himself. But I see the father as being much more social then I ever was and I understand that is important for our son.

I tell our son about some of the great minds who may have been blessed with it and also of some of the theories of how we as a species would not be where we are now if it were not for the ones who were different. I also have to tell him about how it can be a curse if certain aspects are not taken care of. He is very proud of himself and we speak of all sorts of topics in detail. Have you heard of the caveman theory in regards to asperger's/ASD and how some think that the ones who were carving the stones in order to hunt may have had it, while the NT ones sat around the campfires socializing? If I could find a link to it I would post it, but my executive functioning skills are far too disorganized for me to hold onto those things. It wasn't long anyway, just a few lines floating around in cyberspace...

Nahh, myself have written about all that. I even went one step further and placed the main entry of autistic genetic traits at about ~50,000 years ago. The technical name is "Behavioral Modernity." Yes, visual-manual skill development is all connected to it. If you look at the cave paintings: those were the same style as the stick-figures I make for my children. To me, autism is related to the exteriorization (factorization) of information from human brains onto physical objects. It's what had led to our written language. To make it even shorter, it's what distinguishes us from other animals. Autism is what makes us humans, as a species.

-----

Mother Nature works with statistics. There is certain percentage of people (~1%?) that can be infected with HIV virus and never develop AIDS. So, in the old days, if there were an epidemic like AIDS, 99% of people would die, but starting from the next generation everyone will be free of AIDS. That's how Mother Nature works. Similarly, as for autistic people, there are not many bright minds that are needed. In the Manhattan project that made the atomic bomb, only a handful of scientists knew the details about the bomb. And the fact is, the whole project started because of one single letter from Albert Einstein. In the paleolithic days, the clan that had geeks easily beat those without geeks. So, for autism, Mother Nature never meant to save everyone. She just needed the few. The rest simply were destined to perish. That was the statistical nature about autism. Once you understand that, you don't feel so bad seeing people suffer. You can't save everybody. They are not meant to be saved, anyway. With the robotic era upon us, who are we kidding? Each family is only able to take care of their own. The rest is up to Mother Nature's mercy. You snooze, you lose.

-----

As for the "curse" part, it needs not be so. Because of people receiving higher education and marrying later and later, I would say things are turning out better and better for people on the spectrum. It's much friendlier than before. In my daughter's school, all kids have learned to make animation video clips in their first grade, and to assemble and program robots in second grade. Yes, that's an elementary school, a public one. Technology helps. A digital voice recorder comes in handy to help people on the spectrum to get rid of their anxiety/depression issues, so they can focus on the positive side of their lives. I just don't see anything negative about autism, anymore.

I am a realist. So, with all that said, here is my son's kindergarten graduation speech. Really cute. Funny thing was I prepared him so much for his speech so that he could recite the whole speech, but the neurotypical kids did not prepare themselves, at all. The class rehearsal was a disaster. So the teachers had to scale down the scope, and make the kids recite only the very last sentence. Ha. My son did have a chance to do his own presentation in school, with the poster that I have prepared. My wife also brought a microphone and loudspeaker, so my son did the presentation with microphone, and wiggled his hips for the sentence on "did a little dance." Perhaps you could show to your son's father, what a father is supposed to do, in today's Singularity world.

https://youtu.be/4dcIhhmQ1gY

Eikonabridge, I understand at this point Autism is a male dominated issue and I understand what you were trying to get through to me. Im not sure if you realize how women with Autism have been misdiagnosed or went undiagnosed for generations and there is still not a formal way to diagnose them as the symptoms show differently between men and women, when and if that day happens we may see the numbers even out more. I was lucky enough last week to have a good Psychologist at my appointment where he confirmed I do indeed have it also. I believe that is why I can understand my son so well and I have been able to help him so much at this point. And I do see some signs of it still in my sons father, but since he is still in denial over it (both of our sons diagnosis and the possibility he has a form of it) he is not the person to be able to understand what our son needs at this point or in the future. Now that I have a diagnosis, I guess it might be my fault my son has it but not in the way the father wants to think. I am still trying to figure out how to tell him about my own diagnosis or if I even should since he may try to use it against me in the future.

Thank you for your input about this, I do agree with you in many ways about him needing to understand it, unfortunately he is not a very understanding person and he is not willing to learn at this point. At this point I have to teach my son to learn to advocate for himself to his father and that in itself will not be an easy task. I still have to do that with my older son who lives with the father. It will be a very rocky road for all of them if they do not learn to be more accepting and understanding of the needs of others. I have learned a great deal about myself through this process, and I think so far I have learned much more about myself through my children then I have been able to teach them to date. I suppose it is a lifelong learning process we will have to go through.

LOL, it's not just the tool-carving. I bet the first cave person to notice that animals that stored food for the winter didn't starve to death was an autistic woman. All the other women were gathering berries and socializing. She was gathering berries and watching the animals, and her mind picked out a pattern. The tribe listened, the tribe did not starve, the tribe had higher survival rates, the tribe grew, other tribes listened...

Probably an autistic that made the leap from hunting and gathering to agriculture, too. Less talking, more attention to detail, better pattern recognition. "This plant grows where its seeds fall. It grows better if its seeds fall near water. Even better if an animal poops where the seeds fall. Hmmmmm..."

And I FIRMLY believe that the autistic parent (provided they're self-aware and functional) is the parent who should have the controlling say in raising the autistic child. There's a reason why I always solicit my hubby, MIL, and ADHD friends (or friends with ADHD kids) for advice on dealing with my ADHD child. People who are functioning effectively with the wiring in question haven't just read the owners' manual, they ARE the owners' manual. Nobody understands how to effectively operate an XYZ brain like someone who is doing it.

Oh, and-- f**k fault. Not your fault if he inherited it from you, since the alternative would be non-existence. Fault-locating is a wasted activity, recrimination a waste of time.

I agree that its not my fault. That was my lame attempt at humour. I know I am not good at it, I am still a work in progress I guess;)

Here is a site I found that describes me to a T for the most part. https://taniaannmarshall.wordpress.com/ ... -syndrome/

I also see many signs in my daughter now, just waiting for the summer to see the Developmental Psychologist. Her dad(different father, don't judge me) is just as useless as far as understanding the small things with me and her also. Im sorry for sounding harsh, honestly I am working on it.

I have been slowly coming up with a lot of ideas about the feminine side of it. I wish I had someone I could bounce some of my ideas around with to see if it is common in Aspie women. So far it is just me who I know, and possibly my daughter but she is too young still to understand what I am thinking (I am quite sure I understand what she thinks though).

That sounds so familiar it's painful. Still painful, and I've known for almost 20 years.

Leaves me to wonder, how does one stop being oneself??

I get the feeling one is not supposed to stop being themselves. Just learn better ways to cope with it I guess. Personally I still like who I am more then the average NT, even if I have burned many bridges along the way. At least I am allowed to think for myself and come to my own conclusions about things.

I am curious about the undiagnosed women now though and how they have been affected by it. Im sure many have thrived in their field of choice, but what about the ones who never found that? Or the ones who have been abused because of it. I am still processing it myself, it has not even been a week for me and day to day I change my mind about what it means for my own past and future. I can see many ways it could be a gift or a curse. The thing that upsets me now is I am not sure if we will ever get to the root of it because right now due to the patriarchal society we live in and how many issues women have had over the generations, have been hidden or dismissed throughout HiStory and how much HerStory has been denied or rewritten so many times. Will it ever be widely accepted that it happens to women more then most men would like to believe?

I totally see what you mean about the picking berries and watching the animals and how that could have been the original autistic women, but what does it mean for the ones in this day and age who are being forced to comply to societies expectations about women and how the mainstream media portrays them? The ones who try to fit into molds that do not fit them for sure could have many issues without proper diagnosis and treatment. Not that treatment has such a stellar record ATM, but why isnt anyone speaking about what kind of treatment could work for the issues women have related to Autism. So many connections I have been making in regards to my own life to date since my DX, I wonder if any other women have made those connections also?