Diagnosed 2 days ago

Post Reply New Topic

You are very social and have zero friends?

Everything is relative. Being social to me means being able to start conversations with strangers. In the workplace/social settings I can talk to people, new people etc. I have some acquaintances, but no super close friends. The point is that I was very antisocial as a child/teen, but its gotten better. I know that you are implying that I have autism but there is a difference between being socially antisocial and shy vs all of the other symptoms of autism. By the way again I really appreciate the support on this forum, from parents and from people who have autism. I only wish you all good, and again I hope that my words aren't offensive.

Obviously I don't know if you're autistic or not, but a lot of the things you've said make me think you should give the idea some serious consideration. My son is very outgoing, and is also autistic. Not all autistic people were late talkers, and not all are shy, either.
My best advice for you would be to get some books on autism and start reading. There is a lot that you do not yet seem to know about it.

I hope this is not more confusing than illuminating, and I hope it might give you perspective on your child, and perhaps yourself. Autism is a spectrum, meaning that there are varying levels of severity and some people have some but not all traits. Being functional does not mean that one does not have any autism, and being autistic does not equate to being non-functional or dependent.

I, myself, would not have known I have traits of autism if it were not for my son's diagnosis. I find the information on autism to be helpful in understanding my own strengths and weaknesses. I was not diagnosed as a child, and I do not know whether I would qualify for a formal diagnosis today. I have not tried, as there would be no point. My son is much more severe than I. He is very verbal and mathematical but has many social issues and much difficulty managing sensory input and emotions. I have no idea whether his strengths will lead to independence or not. He has made a great deal of progress from when he was a toddler. I hope he makes more.

As you read, and learn, you will either identify with some of the (milder) descriptions, or you will not. To the extent that you do relate, it will become helpful b/c you will better understand your child as well. Autism is not an insult on this board, and so when people point out that this trait or that trait is consistent with autism, it is not an accusation or a negative comment. It is meant to provoke introspection and insight. I hope it is taken in that spirit.

I am not a shrink and not qualified in arm chair (or any other) diagnoses, but your self-description sounded, in my mind, very consistent with mild Asperger's (a description of high functioning autism from the prior DSM) One can be autistic, have friends (although perhaps not tons) , want to be social, be employed etc. If you read the myriad of descriptions here, you will get a better sense of how much diversity there is in this particular diagnosis.

You're right, in my opinion. There is a difference between being shy and socially awkward and having autism. People on this forum and in the autistic community have different ideas about what it means to be autistic, as you have seen, but according to the professional diagnostic criteria ,autism spectrum disorder does require a severe impairment in social interaction and repetitive/restrictive behaviours to a level that causes severe impairment. Here link-clickhereis the criteria for ASD used in the States, you have to scroll down a little because it starts with Social Pragmatic Disorder.

Also, it's possible for people to have autistic traits but not be autistic. Many different genes are thought to contribute to autism and some environmental factors so it is very possible for you to have some of the genes and some of the traits but not all and not the right combination of factors to produce the full disorder.

If you're good at understanding social cues and have reciprocal interactions with people then you don't have ASD, according to the professional criteria.

*btw- I am diagnosed with high functioning ASD but I'm not a parent.

Your perspective is very interesting. I hope your son progresses. I know about the diversity of ASD but the more I read about autism the more it seems that a majority end up dependent. I am not being defensive about not having autism, its something that I thought a lot about and even had conversations with my mother to see if I had these traits. As much as it would help to explain things, it doesn't match most of the symptoms of Asperger's or Autism. The reason is that I never had issues interpreting people. I've taken a test just to see if I had it and it wasn't even close. Am I a geek, yes? Am I on the ASD scale, no. Frankly I don't really care if I am. My son on the other hand has matched so far every symptom. There are some things that are still atypical which give me hope. He babbles a lot. He recently increased the range of sounds. With some work I can get his attention. But its mostly brief. I can get him to laugh. He asks to be picked up if he is sleepy or upset. When asking to be picked up he prefers his mom and will not let his grandfather pick him up. He notices me when I come home. But the reality is that 99% of the time he is in his own world, he doesn't try to see what we point to or do. He doesn't respond to his name. He does repetitive things, and he does flap his arms and run in circles. He also sometimes hits his head in the back of the chair. The difference between him and every kid in the neighborhood is now obvious. Its tough because I don't know which side of the spectrum he is on, and I fear for the worst.

I am doing just that. I've been reading a lot and frankly it scares me. As to me being autistic, great let me be autistic it doesn't bother me, but I just don't have the symptoms that my son does. I wish I could switch with him but I cant.

I've read a lot about how to diagnose ASD. I just don't fit the bill. 3 months ago I started suspecting my son had it. I read all about how to diagnose it. Took the mchat. My wife was in denial at the time. We went to our pediatrician. She said no way, that he had ASD, that he is just a busy toddler, that we can go to a neurologist and she prescribed speech therapy. 3 months later and surprise, he has every symptom and is diagnosed with autism.

He may never be independent , he may become semi-independent and he may become fully independent but require more help and support to get there and may take longer. In the worst case scenario, if he cannot manage any level of independence, there are institutions, care homes for adults with developmental disabilities and there are laws to govern how they're run and require the adults to be cared for properly. This doesn't always happen, there are poorly run institutions but there are a lot of good ones with caring staff too and there is legal recourse if staff are not treating the residents properly. The institutions here are much better than those in Eastern Europe, from what I've seen and heard.

If he can be semi-independent then there is disability money from the government if he can't hold down a full-time job, there are special free government programs designed to help people with disabilities find and keep jobs and there are community housing programs where he can have his own space and have a caretaker look in on him every now and then.
If he's very high functioning he may take longer to get on his feet, to finish uni and get a job that he can keep. He may have trouble along the way.

The best thing you can do is make sure he understands that you love and support him and are unashamed of him or of his condition. Tell him about his disability when he's older so he knows why some things are harder for him (while others might not be). My ethnic background and is Eastern European Jewish and I know another family of Russian heritage with an autistic child. Some people of Eastern European heritage that I know see mental disorders (and sometimes developmental disorders, like ASD) as a weakness and something to be ashamed of. If you're inclined to think this way at any point, remember that the brain is physical, it's a part of the body and a disorder of the brain in development is just as serious and real as any other physical disorder. If g-d forbid your son had a form of childhood cancer, you would probably have pity and compassion for his struggling and difficulty.If he couldn't do as well in school or couldn't find a job because of it, you would not think of him as lazy or useless etc., I hope. This is a disorder of the brain and it will cause difficulty. Try to be patient, tolerant and compassionate. I think that is the best thing you can do for your son.

ETA- I'm NOT trying to say that you should let ASD be an excuse for anything and everything and not discipline him at all. ABA therapy works well with some kids. Just keep in mind what the symptoms of ASD are and how simple everyday things that would look like rudeness might be manifestations of the disorder and have patience with that. You said you've been reading about ASD so you probably know the symptoms well. One example is if you tell your child to do the chores in a "polite way" by saying "do you want to take out the garbage" he might take it literally and think it's a choice. There are so many non-literal expressions that people use without even realizing it. Okay, I digress....

I am also Jewish from Russia. We look at these things differently and not in a good way. I do feel compassion for him but its hard for me to be positive about it. What you describe is exactly how I see it. I don't think I would ever institutionalize my son until I leave this world. We don't do that. For us to put our parents in a nursing home or elderly care is a crime. This is my biggest fear. The last time I've had such a hard time coping with something was the passing of my grandmother who raised me. But as difficult as that was it got better as time went by. This can only get harder because the differences with nt (I am learning) people will only increase as he gets older. When my son was born I said this is our future. This is our new world. Now there is a hurricane on the horizon.

^^^
To be clear , I think it's good that you don't want to institutionalize your son and if you and your wife can take care of him until you no longer can and other family members can look after him beyond that time in a loving manner, then I think he'll be much better for it. Of course even good support workers aren't as good as a caring parent, IMO.

I still live at home with my mum and am finishing my degree in Library Science slowly. My grandfather lived at home with us until he shortly before he died.

The only thing I wanted to explain was that if the absolute worst came to pass and there was no one to look after him or it was beyond the capacity of non-professionals, there are good institutions and government programs here in North America, so he wouldn't be doomed. If he lives in the care of family then there are also programs designed to help disabled adults live more productive, fulfilling lives here.

Of-course it's hard to be positive about it all the time. I definitely think it's very normal and okay to be upset (and have other negative feelings) upon finding out that your child has a severe disability and may have a lot of difficulty in life. Hopefully, as he grows up and there is more certainty about his level of functioning and an appropriate plan in place to support him, you'll be able to think more positively about things.

Some good things: At-least he is in otherwise good physical health and can live a long life. At-least he lives in North America where there are good programs and therapies to support him. It isn't perfect here, far from it but there are better resources available than in many other countries. As to one of your original questions "will he ever respond to his Aba?" the answer is most likely , yes, he will develop some capacity to respond. Most autistic children do. *ETA-Many parents of autistic children do form a bond, a connection with their child. Although he may be incapable of responding for a long time, many of us develop slowly and have major "social growth spurts" later as we grow. Don't give up. Most autistic people also find things that make them happy in life, often very intense passions, though not necessarily normal ones, so it's not like he'll be miserable all the time.

I wish your family well, g-d bless you all.

Last edited by daydreamer84 on 20 May 2014, 8:02 am, edited 1 time in total.

It's interesting that you use a meteorological phenomenon as an image to express your feelings.'

Everyone talks about the weather, but no one does anything about it!
Why? Because there is nothing to be done.

The pursuit of control is a waste of time. You can train to become skilled in various disciplines and thus improve your flexibility in responding to the chaotic vicissitudes of life, but, ultimately, you control nothing. Control is an illusion and hurricanes teach this reality well.

My reading and discussions with others tells me that parents always struggle with the difference between the reality of their children's beings and the imagined futures and the projected longings the try to shape their children into. The children have inner natures that will emerge, no matter the desire or controlling effort of the parents.

This fleeting world is like a star at dawn, bubbles in a stream or a flash of lightning in darkness. The events of life pass like a dream. We may will one thing or another, but things unfold in their own way and the only certainty is change.

You said "My son since he was born has been perfect." Hold fast to this perception. Together you will find a way to deal with things as they are and rejoice in the good you find and make. That's all there ever is, in the end.

Autism is not a death sentence. It could be a path to genius.

Bkdad I know it's hard. But you may be getting ahead of yourself.

Will your child ever be perfectly typical? Probably not.

But he babbles, you can make him laugh, and he likes you and his mom to pick him up. And can be engaged. He's only 19 months. This may not be as hard as you are expecting.

The bar for toddlers is set a bit low to encourage early intervention. And sometimes it works.

Meanwhile reading is good. And look for how you can share his world and help him share yours.

These are huge! Very positive signs. I would suggest that you look into Floortime/DIR -- it's all about expanding your child's engagement with the world through play. It is far too soon to be dwelling on the worst case scenarios. Focus on doing the best by your son for the next 1-3 years, and then reassess where he's at and what he needs next.

My DH went through a spell about 2 years ago where he despaired of ever having a relationship with our son and wondered out loud if he should just focus his energy on the younger siblings. And this was with a kid who was fully verbal and engaged with the world! Recently he told me that I was right that things wouldn't be as they seemed then forever -- our son has changed so much since then, and the two of them go camping and do cub scout projects and are really developing an amazing father-son relationship.

You've mentioned some good, strong positive signs so I have a lot of hope for your child. He is far too young for anyone of us to know what his future will look like, but do not assume he will be dependent; odds are good for a different result, and constantly getting better.

Of course you worry. How can you not? But do NOT let that distract you or keep you from doing what needs to be done here and now: engaging with and knowing your child. Everything flows from that.

I apologize for bringing up the "maybe you are ASD, too" question, for that ended up being a distraction. My original idea was that if you saw a connection, it might help you and your child. And, also, I do want to make sure you let go of the control concept. We parents don't get to control much, no matter how much we think we are supposed to and no matter how hard we try. We do get to influence, though, which is different.

Anyway, I wish you the best during this transition time and all the difficult or wonderful times that will ebb and flow from here.