How much should ASD children be "pushed"

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I was reading some of the post in the General discussion and it got me thinking. Most parents with ASD children do a lot to accomodate our children at home, school, etc. However, once they reach the age of maturity alot of these adults still have the same issues they had as children. Unfortunately now, a lot of the support is gone and as parents, we can no longer "protect" them from everything. The world does not always make accomodations for these adults and unless they are the few who somehow manage to overcome their challenges, these adults are now unable to fully participate in society.

I notice that a lot with ASD adults having a variety of issues that they say prevents them from working. I don't know what the right answer is. My son is still fairly youn, he is 3 1/2. But I wonder if I should be challenging him, preparing for what the real world is like. Or, should I continue to make accomodations for him that obvioulsy makes him happy and less stressful.

I would love to hear the advice of ASD adults and parents who have been through this. What gave you the strength to overcome your challenges and manage to live independently? How do I find the balance of when to push him (because I feel he is capable of it) and when to accomodate him? I don't have that comfort anymore that with enough time, everyone catches up.

Hi There,

I can't possibly say whether what I am doing is the 'right way' but I have talked about this quite alot on my blog- can't put link here , it won't let me

I try to challenge both my children whenever i can and when they are in a positive frame of mind... if highly stressed, under pressure or already having a tough day, I leave it for another time. Today is a prime example:- my son hates mud. Doesn't like to look at it , tread on it or anything. BUT we have had a few issues where we have needed to cross some mud and cue major meltdown. My choices are a) Avoid mud at all costs for ever and a day or b) help him deal with mud. I choose b) because I am not always going to be here. he is going to be a grown man and he may have to cope with mud- if I don't help him who will? I am his mum, i want my son to reach his full potential. In my eyes that means I have to equip him with coping strategies to deal with whatever life throws at him. If i didn't , already , i would have a child that a) wouldn't go shopping b) controlled EVERY route we went on ( what happens when as an adult there is roadworks and the bus has to go a different way- full blown meltdown? huge anxiety? ) c) wouldn't go near mud, wet grass, snow, go out in the wind etc etc

I support my son, I don't just expect him to 'get on with it' and sometimes it breaks my heart to see him struggle but i also know with my support, next time will be easier ( e.g. mud today- major meltdown, support through, trod on in wellies eventually, HUGE amounts of praise... by the end of 2 hours I had a little man covered in mud and SMILING... his self esteem and confidence has gone up and he knows in his mind he has 'dealt with mud and he survived and he can do it again!'


I know a few people who give in to every issues their child with ASD ( whether because it is a 'pity' thing , but more often than not it seems to be an 'easy option' ... giving into demands in the short term maybe make life easier , but long term , in my opinion , it is a recipe for disaster)... to me this insults a child's intelligence.... every child can learn with support. having an ASD is not a license to what you want... no-one can . That is life! To me it is much kinder to help children when they are younger... no-one will come knocking on your door to teach your child daily living skills, how to cope with transport, noise, cooking , transitions....etc etc If they don't have these skills as an adult, their lives will be severely limited

Again , I hope I am doing the right thing... I feel in my heart this works for my children and I hope they go on to be and do all they can be:)

Beth

as my son gets older, he is almost 7 I fear for his future. he is EXTREMELY intelligent, he has the capability to do and be whatever he wants. The issues are his oppositional behavior, his defieance, his NEED to be in control, his lack of understanding the world doesnt revolve around him. He has all the potential, I just worry what IF those issues dont go away? So, I do push him. It would be silly of me to assume all those things will dissappear, so I work with him on accepting change, accepting NOT being in control 24/7, conforming, etc...We recently hired an ABA to work with challenging behaviors. I am not sure if ANY of this will help, but it is better then me sitting back and doing nothing.

I fear that if he cannot follow rules when he is an adule, what will hapen. How will he hold a job? he needs to be in control, in an ideal situation, he will be the boss, but it takes time to get to that position, and int he mean time, he needs to learn to accept limits, rules, boundaries, etc...
His comfort is being in control, callng all the shots, doing what he wants when he wants is, and there is time for that, but there is also time for the opposite.

Not sure if that helps, but that is where we are at!

Well certainly not too hard...I mean it is good to have ones mind challenged in order to learn, but too much pushing can be too overwhelming. When I was a kid no one knew if there was anything wrong with me or whatever so they expected me to be able to keep up with all the other kids in all ways and be able to handle the same things. Well I ended up feeling like a total failure at life and I still feel like that. Basically I was pushed too hard, and then I ended up blaming all my shortcomings on myself as though it was something I did wrong rather than anything specifically different about me.

So there should be a balance......and in psychology I learned it is important to have a supportive safe environment. So a bit of pushing to challenge him harder is not all bad, but it has to be balanced with a safe, supportive environment because constant stress certainly does not help positive growth.

I'm with Maisiemoon in that I challange my aspie as much as I can when he in a good state of mind. My son wasn't dxd until age almost 9, but at your son's age, I would accomodate him as much as possible to give you opportunity to study him as much as possible. Doing this, you will get a far better feel for his real weaknesses vs. where he might be manipulating you. You want to understand how he thinks.

I think most, if not all, parents have only the best in heart for their children. I think we all want to push when necessary to insure our children grow to be as independent and sucessful as possible.

No children, especially not aspies, come with instruction manuals. Add to that the baggage each parent brings into parenting and you get the result of many parents not being able to challenge their kids. It's just very stressful and difficult for most of us to push them in a calm and timely way. You kinda have to do it perfectly and still the child can push back terribly hard. On the other hand, I think when we see our kids just get too far, we see it and try to reign it in as much as possible.

In my case, my son was terrorizing my daughter. It took a friend to point it out to me, since I was awash in "accomodations". We had to place strong boundaries in his life. I could see that he never hit anyone outside the family, so he was capable of control. My husband and I stuck to meaningful consequences (mostly extra chores which reduced his screen time while still leaving some computer time), and the behavior diminished in three weeks.

I try to remind myself that no matter what we do, he will always have Autism. No matter how hard a parent pushes, you can't take that away. I don't agree with spending his whole childhood trying to rid him of something that won't go away.
After taking that into account we prioritize. What behaviours are important to work on, and what can be left alone. We don't just accept his limitations and cater to his every whim, but we can not just expect him to be typical either. So things like having a tantrum (he has tantrums, not meltdowns), when he doesn't get his way is something we do not accept. I have seen many children with ASD's grow into adults who scream and hit for their way because their parents felt sorry for them as a child and gave them everything they wanted. But then there are other things that are less important, like if he struggles with eye contact, we won't hold his face and force him to look at us like some people do, but we'll try to encourage it a little by holding things arouhiatus face and getting all happy and excited when he looks. This way it's on his terms. He's picking up a valuable skill at a pace which is comfortable for him. If he doesn't want to color with crayons like other children his age, who cares?
I think priority should always be placed on aggressive or maladaptive behaviours, and everything should be as fun as possible. You will know when you work with him if he is enjoying it or if you're pushing too hard. Respect the pace of your child. Pushing is not going to catch him up, there is no getting rid of Autism. You may just make a child miserable by pushing too hard.

I think a part of what has me so confused is that my sons symptoms are still mild (no meldowns, minor behavioral issues). His major trait right now is that he has poor impluse control when it comes to running away from me. He is capable of learning danger though but it seems he has to experience it. For example, he learned fire hurt when he grabed his lit birthday candle, he learned that walking between the house and the shed will hurt him because he got hurt buy the rose thorns, etc.

But, I keep reading that it all get's worse. That my baby's ASD will get much worse before it gets any better. Do I start to challenge him now or later? School will challenge him. The idea is that I should build on that, but how do I build on that and still make home a safe place.

maisiemoon - I like your approach. I actually tried something like that a few weeks ago. He was timid at first but I eventually got him to run and play on wet grass, barefoot. It took about an hour and the whole family had to be on the grass, barefoot, playing.

MMJMOM - I have the same fear. I don't want him to be dependent on people or the government. I want him to learn how to govern himself enough to hold down a job and take care of himself. I just need to figure out how to get him internships and like skill class when he is still in his teens to ease him into adulthood.

Sweetleaf- Thanks for sharing your experience. I wish I knew what the perfect balance is. I think it will be trial and error. I certainly don't want to crush his self esteem. But I think the world will be harder on him than I ever would think of so he will need to learn to adjust if he wants a chance of living independently.

aann - I am there with you. There is no manual and yet, we have to find the right balance or the connsequences are so great.

Wanted to add, if it's feeling like too much work to you and you aren't enjoying just spending time with your child anymore, then you're doing too much. A lot of parents run themselves into the ground racing against the clock. If you're not happy and enjoying your time together, your child isn't learning much about a healthy relationship.

McAnulty -thanks for your reply. I think we all know that there is no cure for ASD and I don't think anyone wants to drastically change the person that their child is. This is more looking at the long term. What will help a child with ASD live independently.

The thing is, once they graduate HS, all the services we get for free is gone. So, unless you have a lot of money or you can keep them on your insurance, the support drastically dries up. No what. We are parents so the vast amount of us will die before our children. Do we then guilt our other children into taking care of their ASD siblings (assuming they have siblings, or these siblings are not eager to take on the responsibility of an adult ASD sibling). Or, do they live in an instituion. Disability payments here are not enough to live independently.

For us, that is what is at stake. I would push my son to the limit if it means at the end of the day, he can fend for himself (even if he ended up resenting me). But I doubt that's the way to go. My son needs to learn that he has to do a lot of things that are uncomfortable, difficult and even painful for him to do because the alternative is by far worse. God help me to find the right way.

In NYC, there are a lot of homeless people. Most of them are from the mental hospitals, discharged with no place to go. You see them, dirty, smelly with infections on their body. My heart breaks thinking that could easily be my son.

That's my biggest worry too, I think the fear of what will happen after we die is huge for most of us. I get overwhelmed and spend nights crying about it. But worrying about it at such a young age is just torturing yourself, it won't change the future, and you might be pleasantly surprised by what services become available by the time your child grows up, or by the fact that perhaps he will be independent, or he will have people who love him and are more than happy to help take over when you're gone. I know how easy it is to get caught up in all these fears, but try not to let them overwhelm your life. Things might turn out much better than you think.

I have this dream of a perfect system where parents of children with ASD's take in older affected adults whose parents are unable to care for them in order to receive the same help for their children in return when they grow up. I wish it was more than a silly dream.

I can see your point, but also sometimes I think society should make a better effort to accommodate those who can't keep up or function well in it. I mean why should people with mental disorders have to spend all their time and energy pushing themselves or being pushed to somehow adjust to some society they aren't fit for.

Point being he certainly needs to be aware of what kind of things to expect, and maybe coping skills and stuff like that....but everyone has a breaking point and pushing too hard is usually what brings people there. So he also should be aware it's ok to have difficulties and limits on what you can do...and it does not mean you're lesser than people without those difficulties and limits.

Fact of the matter is not all of us can 'adjust' to it....and well I'll probably end up rambling if I continue on this.

My parents pushed and challenged me a lot to get out of my comfort zone, but they always seemed to know when to stop. Bringing the best out in a child is important, but also understanding their hard limitations is the key.

Sweetleaf - you are right that society needs to make certain accomodations. Maybe in 20 years they will. But I have to plan as if they wont. How cruel would it be for me to leave my son to depend on the same society that has no place for him. So many people fall through the cracks, either they don't have anyone to advocate for them or can't advocate for themselves. Him living independent is not doing "society" a favor. society couldn't care less. He is doing that for his own survival. It is in his best interest to not end up on the streets, begging for food. In the winters our trains and subway stink. They stink mostly because all the homeless people, most with mental illness, ride the trains to keep warm. But, because of their untreated mental illness, they pee and poop on themselves, over and over again. Most survive from the people who ride the trains handing out food. Society doesn't care. So, my son not being independent only hurts him. Society would rather not look at him.

thewhitrbbit - I would love to know what your parents did. It would be so helpful. Also, I see that you are still fairl young, but do you feel that you are learning what you need to learn in order to one day live independently?

McAnulty - You are right, there are so many things to worry about, I could worry myself into the ground. However, when I feel helpless, like I am feeling right now, it helps to talk about the issue and try to come up with a plan. My plan might change weekly or montly, but I need to feel like I am helping him in some way. It helps to hear other people's stories so that I can try and avoid the same pitfalls. There are times though when I forget all of this and we are just a regular family. Talking about my fears and coming up with a plan, helps me get back that feeling of normalcy. Okay, that may not sound like it makes sense, but honestly, that's how my brain works.

I totally get it, I'm the same way. I like having everything all planned out, and having back up options and knowing exactly how things will play out. Like you it leads me to stress about a future that is decades away. When I feel like there's a plan all of a sudden I can be happy again. It's good to talk about it, I'm glad that you're aware of your thought processes and that you're able to let it go sometimes and just be a happy family.
I think this need to plan everything is really helpful for our children, even if it causes us some distress. We're the kind of people who think of absolutely everything, always prepared.

I think it is more of an art than a science. Yes, I worry, frequently, about the long term, when I am gone. But there are short term and medium term issues, too. I don't want my son depressed, anxious or suicidal. These are frequent co-morbids. If he is suicidal there may be no long term to worry about.

They have as happy as you can make them, while still teaching them life skills. That is the challenge. At the end of the day there are no guarantees. Even if I were to push him as far as he can go, there is no way I can know to what degree he will be self sufficient. I can't sacrifice the present, the short term future and the medium term future on that hope.

He has to be able to trust that I have his back and that he can tell me things. I cannot protect him in the here and now if I don't. I don't have the luxury of having him "hate" me.

I try to push gently and see where it takes me. I concentrate on only a couple of things at a time. During the school year, I focus on short term help for the stresses I cannot control, and putting out fires. During school, he has plenty of those to "learn" from and can't assimilate more. Anything beyond that is a bonus.

During the summer we work on some long term skills, home type issues unrelated to school, but that are still important to the family, and teaching different ways to think about things and flexibility etc.

My son is seven, so it is easy for me to say that, now. My thinking may evolve, but that is where I am right now.