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What Does it Mean to "Accept" Autism?

By February 12, 2008

What does it mean to accept people with autism as they are?

Sandy, a regular commenter on this blog and the mother of a child with autism, has this to say on the subject of acceptance:

Acceptance really is already being aware and offering their children things to help them. It simply is not as simple as acceptance alone. It's much more than that and as a parent, we must all strive for more than that or our kids would never make it in school, in the community or home. If we all just accepted our children without offering anything else, we'd be doing our kids no good.
Certainly, all good parents provide their children with the tools they need to grow, develop, learn, and succeed. Some push their children toward specific character traits, beliefs, careers and lifestyles. Others are less directive. But no good parent would simply "accept" their newborn as they are - and provide no direction or support.

Children with autism need and deserve parental guidance. But autism does present more of a challenge. Parents can accept their child's preference for solitude - but fear that their child's lack of social skills will limit their options in the larger world. Parents may accept their child's passion for Pokemon, chess or trains - but still try hard to expand their child's horizons.

When is a parent's intervention positive and helpful - and when is it overwhelming? How can a parent provide a child with autism with skills, options and opportunities while also respecting that child's distinctive personality and characteristics?

Like any parent, we are walking a fine line. Unlike most parents, though, we are pushed hard - by family, peers, schools, agencies and the media - to do more, more, more for our children with autism.

So... how much is enough? How much is too much?

Comments
February 12, 2008 at 8:10 pm
(1) qchan63 says:

To me, “acceptance” really takes in a number of concepts, including appreciation and respect.

I agree that all parents — whether their children have developmental issues or not — need to do all they can to help their kids reach their full potential.

But i think what can get lost in our community, especially among desperate parents who are focused on little but trying to make a child not autistic, is the simple appreciation for the child and whatever progress and achievements he or she is able to make.

I just think it’s important to respect and understand the child that IS, not the one we might have once imagined or wished would be with us.

I think there was a study a while back that indicated that autistic children whose families responded to the condition with a positive attitude (although i know firsthand how difficult that can be) tended to do better than those living in families that were not so inclined.

Given the difficulty of emotional reciprocity for many autistic people, i think it’s easy to tell ourselves that our attitudes as parents don’t make a difference. But I believe they do.

February 12, 2008 at 8:49 pm
(2) Sandy says:

I really do love your blog and the information you offer your readers. I do believe overall, this is one of the better places for new parents or old parents to surf to.

This would be different for each child. I wondered for many years and kicked myself as a parent for not realizing autism signs, and although they were clearly evident, I didn’t know and my child started interventions much later.
I decided my coping method was to tell myself, my child would not hold it against me for things I just didn’t know.
I think what many are considering parents are doing is trying to change that child, and maybe some are. Many of us are just trying to give that child the same coping skills I needed much alike that being the parent. We are not, I am not, trying to make my kid into something he is not. I am offering to tools to help him be a better whoever he’s going to be.

I did nothing invasive except for a GI endoscopy (both ends) but that was for a medical reason unrelated to autism.
Without O.T, my son would not had learned to adjust to the very many different smells of this world, or food textures. They help me to learn how to offer safer pressure seeking activities that did not result in broken bones. They offered music therapy and thank goodness it helped or he’d have much trouble since I am a constant humming person :) Music is every where. Some where along the way, I was able to hug my child, and he allowed it.
Without Speech, who knew my non verbal child would one day talk? He started saying sounds, and yes, I did push for a Ju for juice. I did push for a Coo for cookie. Our in home therapist told me some thing of her 20 years experience that got me to thinking. “Some with autism think you can read their minds, in a sense, and speech isn’t needed since your child thinks you just ‘know”. Who knew with a little push and a battle of the wills, my son would be fully verbal without his stutter? Who knew that with Dyads, who would communicate in a 1:1 peer group, and listen to his peer?

Did I know when to stop offering help? Is it written some where for each child? No. I have been saying for quite some time I can not take away some one else’s hopes and dreams of a cure, but I can tell you there is so much hope without it. Now my child shows hardly any emotion and the word love he wont ever say. However when my son is repeating, and repeating me, I throw in “I love my momma” stops him in his tracks. Repeating isn’t fun if love is in it! One day he may be able to tell me, but if he cant ever say it, I don’t really care. I see it every day as he wears head phones as he listens to his own music. I see it when we go a year without major injuries. I see it when he learns when he’s going to throw up or to avoid what makes him throw up. I see it when in 2 years of school he’s only thrown up once around his peers.

I cant begin to tell anyone that at age 3, I’d would had told any one no way, there is no hope and this autism stuff is hard! Well, it is hard, however never loose that hope.

I believe this blog has the steps of grieving, and like it or not it’s common. I cant tell you how many parents I have shared that article with. Most parents first learning about autism have to know why, they have to try each and every thing out there and maybe I would have too. But I wondered, when does a little boy just get to be a boy? We have to allow parents those thoughts, those trials and not make them to feel badly.

There was once a generation who sent their kids to institutions. The generation we are in right now is about the most accepting it will probably be for a while. The world has come a long, long way and without interventions and help, where would our kids be?

We keep our kids with us, and we simply offer them tools, and treat the medical conditions as they come.

The dividing line between us should not be cure, no cure, who has a right to this or that. Eventually we all realize autism is too life long, just as they say. But during that life time, so far my child has taught me just as much as I have taught him and I would bet that of many parents. My child showed me his potential has no limits, all he needed was help.

And by the way, my coping skills now are I did just the right thing for my own child, and by golly look at him now. I have a few web sites with him all over it along with slide shows from infant on up. You can almost watch his progress as he get’s older.

All parents NEED to know no matter what they choose for their own child, no matter who pushes and shoves (I have a sister who does this) you go with your gut. No one said a parent was perfect. Never met one yet but research your options and never take what worked for my child to work for another.

February 12, 2008 at 9:00 pm
(3) autism says:

I have two kids. Tom, 11, is diagnosed with PDD-NOS, and he’s homeschooled. Sara, 8, is neurotypical and publically schooled.

Tom is a terrific clarinet player. He’s no savant, but he’s good, and he has perfect pitch.

Sara is a really good athlete. One coach said she could become a “world class” climber if she practiced every week.

I’m constantly in conversation with myself about both kids. Do I push them to do more with their talents? How hard? Do I create opportunities – or let them find their own way?

It’s a little tougher with Tom, because he’s much less likely to say “I WANT to play in an orchestra,” even when and if it’s something he’d enjoy. And he’s less likely to find opportunities to, for example, just jam with peers. So I feel I have more of a role in finding opportunities, getting him involved, shadowing him when necessary, annotating his sheet music… And I suppose, in a way, I AM molding and shaping him… but if I don’t, I think – he could have done it, and I just didn’t bother to help him find the outlet.

It’s tricky, for sure. But no one ever said parenting was easy!

Lisa (autism guide)

February 13, 2008 at 6:45 am
(4) Autismville says:

It is a fine line … with both my NT child and my child with autism. Ours is a family of Type-A personalities, so I do have to watch both kids to make sure they aren’t overscheduled and overwhelmed…

My NT daughter amazines me with her competitive drive. I would be happy if she could just relax a little. Just not in her personality. Jack, my son with autism, is not ever happy to just be hanging out at home. He wants to go, go, go … I can’t tell you how many times he’s come to me with his coat and shoes, requesting in his sweet, non-verbal way, to go. He seems to love staying busy with therapy, etc.

As their mom, I want the same thing for both of my kids. I want to help them reach their full potential … push just hard enough…find a way to make the world a better place. I want them to be able to enjoy this crazy life … to love and be loved.

For me, that has nothing to do with autism. Jack is not autism. He is Jack. Amy is Amy. The sky is the limit for both of them.

February 13, 2008 at 9:08 am
(5) Krissy C. says:

What does it mean to accept people with autism as they are?
Acceptance is, okay, my child has autism, ďget over it, already!Ē..Letís move on and do the best we can for our child/children and family and move forward. I have yet to meet a family that does not strive to offer their children the things to help them, and like any other family, encourage their kids to be all that they can be, whether or not they have autism!
To finally have feelings of acceptance is a HUGE part of the grieving cycle, and letís take a look at that. It starts with denial, you move on to blame, anger, anguish, and lastly acceptance.
I think itís important to have personal goals for your child with autism. That includes family morals and values like any other family.
Acceptance does not make you any less of a parent or good parent.
It does not make sense to me that a parent would simply accept their newborn as they are and not provide no direction or support. I have yet to meet a family like that, and that would obviously be under extreme circumstances for that to happen.
ALL children need and deserve parental guidance, not just children with autism.
A parentís intervention is positive and helpful when it is accepted and when it is not intrusive.
A parent can provide a child with autism with skills, a variety of options and opportunities and at the same time respect their needs and wants. Acceptance comes with respect. If you do not respect your childís distinctive personality and their characteristics, they will know this and you will not get out of them what you want. How would you like it if you were encouraged to do something that can be uncomfortable or overwhelming knowing that your parent does not accept your unique personality and the characteristics that you display? Pretty crappy, isnít it?
I am not pushed hard, I choose to push myself hard, I choose to encourage our school district to strive for high expectations of our kids, because they ARE smart. We do all we can to educate our schools and their communities.
How much is too much? Too much in my opinion is when you stop enjoying and appreciating the qualities of your child/children and it interferes with THEIR enjoyment of being with you and others. They can start to shut down. Our kids have a high sense of intuition of this and itís up to you to recognize it.
How much is enough? When you get positive results and want to move forward each time in a positive manner. Listen to what our kids are telling us, behaviorally, sensory wise, look at the body language and what they say (if they can speak or use other methods for communicating).
Our kids with autism are the greatest teachers of all. I think you need to look for answers from them.

Proud Mom of Jim and Timothy C.

February 13, 2008 at 9:41 am
(6) AspieMama says:

I agree that it is a very fine line! To me it comes down to the intent of your “interventions.” Are they to “cure” a child just to make him “normal?” Or, are they designed to help him learn to function in society, while still nurturing the individual gifts, talents, and interests that make him unique?

AspieMama

~A Blog for Parents with Asperger’s~
http://aspiemama.blogspot.com/

February 13, 2008 at 2:48 pm
(7) Brett says:

The role of the parent is (or should be) very much like a coach. (I have in mind something like tennis or gymnastics, individual sports in a social environment, but you can choose your own.) When the child is young, it is up to the parents to set the goals and direction. As the child grows and becomes more familiar with the environment and what he/she is capable of and interested in, the parent adjusts a bit and keeps the kid on track. At a certain point, the child sets the goals and direction, and the parent helps the child work with, and to, their strengths to achieve their goals in life.

This process can be applied to all kids. One key difference is the timeline on which the goal setting and direction shifts from the parent to the child. Another obvious one is that it is a bit more difficult sometimes for the parent to understand what the child’s goals and desires are.

This may be a vast oversimplification, but it seems to work for me.

February 13, 2008 at 3:30 pm
(8) Val says:

It means a parent uses intervention but is looking help their child not cure their child. It means not to talk about your child in a disgusting manor. I see so many parents who should keep their traps shut.
The child’s behavior worsens when they feel unloved.

February 14, 2008 at 9:51 pm
(9) Debi Dee says:

As kids grow their tastes change and they accept a wider variety of foods, same with their talents, gifts and abilities. I make mine step out of their comfort zone but just long enough to see if they may like it or want more. Why do we feel (I feel it to and fight against it) pressured that we must find this special gift that our child has by a young age so they can develop it enough to be a Tiger Woods or Bill Gates? I must constantly remind myself that everyone runs the race, but differently, different pace, different place and there is only one winner and one loser. The rest of us are inbetween. What is the matter with that? Striving for the best we can be is good as long as it fills us and those around us with joy. NO FEAR was so popular years ago…why are we so afraid that we aren’t doing something right? I think we are all doing something right because we care, we love, we try.

February 16, 2008 at 12:19 pm
(10) delores smith says:

Oh My the big push Questions,My autistic 6 year old pushes me to push him,i being a nana,was more than willing at first to acept zack the way God handed him to me,but Zack pushed for more.In pre k at first he was in self contained as he was a runner,autistic with post tramtic stress etc.but he soon became bored so he went to a life skillsclass which is the middle class before reg. class.and he thrieved.then i put him in a public elm. school,for kindergarden,where he was put into a self contained class with mixed disability,s,improperly trained or staffed teachers,There he was actually abused by aides,it was a catastrophy.So i searched for the proper school which he is in now ,only 8 kids,trained with autistic kids and he loves it.But as far as pushing the child ,no i did not ,i pushed the system.When that did not work,i just relocated after much research,to a appropriate school.I give him guidance and love,and let professionals teach him. I follow their lead We go to stores wallking now instead of buggy,even if it,s only for a few moments at a time,i have learned for him to have patience i have to show patience,autistic kids as others learn from our examples.They are already extremely intelligent,so no need to push.But yes we do have to prepare them for the future,same as we would for anyother child.Zack hates for me to show him how to do things ,so i learned to let him see me do it and he will go alone under a big comforter,and do it perfectly.Plus we use a full length mirror for self identification.He taught me this,i had never heard him say his name or mine,or say i love you.one day in the bathroom he pulled my face beside his in the mirror,pointed and said namy,and zackary,pointed at my reflection and said i love you.My heart bursted with pride and joy.So don,t worry about pushing them,because believe me they are the ones who will push.Let them do the leading you follow/alot of people push for inclusion with non autistic kids,but most of the young kids will include themselves in due time.At first i think they need one on one and to0 much inclusion only confuses them more sensory wise.Like birds and bee,s most want to be with like kinds,and learn together,this helps with self esteem problems also.plus they have friends who understand.Mostly i think parents should relax,enjoy your child and let them enjoy you.Give guidance,when needed,and most of all remember,love can move mountains,and kids are natural born climbers

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