How as Autism changed you as a person

[martyn]

It's made me more aware about relationships, it's brought me closer to my daughter. After the after shock of diagnose . It brought me closer to my daughter. I love to spend time with her talking about girly things .The trouble is i'm a 52 year old bloke. But she shares everthing with me, her feelings about boys and so on. I totally love those moments.

She's a very special lass, God gifted me and my wife with her.

I'm sat her typing this down with tears in my eyes, thinking what sort of a future she as. How I hate the Autism though. How it's interferred in my daughters life. The social isolation she suffers through no fault of her own. The difficulties that have inpaired her enjoyment of life.

I wish I could lay my hands on her and draw the ###### Autism out of her. I feel rage, Deep upset, despair. anxiety. fatigue. disbelief. Sorry to to make it sound like a shopping list. But the things that keep me going are a deep love for my daughter. and drive and determination not to let the ###### system grind me into the ground.

 

How Do You Feel?

[Diane]

How I hate the Autism though. How it's interferred in my daughters life. The social isolation she suffers through no fault of her own. The difficulties that have inpaired her enjoyment of life.

I wish I could lay my hands on her and draw the ###### Autism out of her. I feel rage, Deep upset, despair. anxiety. fatigue. disbelief. Sorry to to make it sound like a shopping list. But the things that keep me going are a deep love for my daughter. and drive and determination not to let the ###### system grind me into the ground.

 

How Do You Feel?

 

Hi Martyn,

 

Your words have moved me deeply. It just brings home to me how much I'm still struggling to come to terms with the what having ASD means to my son. What upsets me is despite our best efforts how little our family and friends really understand the struggles that our child lives with and the impact it has on relationships within our family unit.

 

I want to protect our son from the world but I know this will do him no favours and so I have to stand back and let events happen before I can give him a real understanding of the situation and how to deal with it. It breaks my heart.

 

It has made me realise how the education system of inclusion is failing our children for lots of reasons. That society as a whole has a very narrow and blinkered view as to what people with an ASD are like and how they should behave. How quickly people judge those who do not fit the 'norm'.

 

Yes I feel angry. If I could take away my sons ASD I would. Life is difficult enough without having an ASD to cope with as well.

 

What keeps me going is my love not only for my son but my husband and daughter also. I have to believe that the effort I put in is making the difference even if it is hard to see. My son told his therapist that he thinks 'I am the best mum in the world because I never give up on him'. I cried buckets!

[NickyB]

Yes I feel angry. If I could take away my sons ASD I would. Life is difficult enough without having an ASD to cope with as well.

 

What keeps me going is my love not only for my son but my husband and daughter also. I have to believe that the effort I put in is making the difference even if it is hard to see. My son told his therapist that he thinks 'I am the best mum in the world because I never give up on him'. I cried buckets!

 

Awww, bless him <'>

That's made me feel all emotional now. I can only echo what you've both said, I sometimes wish I could change things. But I keep reminding myself that DS would be a different person without the ASD, and I'm not sure I'd want that - he's a totally amazing little boy, always making us laugh

Most days, I find myself going through the whole range of emotions, like a rollercoaster but, as you say, it's the love for your children and family that keeps you going. Thankfully, I have very supportive family and friends, who all try their best to understand what us and DS are going through.

I do worry about what the future holds for him, but I guess all we can do is take each day as it comes and try to steer him in the right direction.

 

It's certainly made me feel differently about other people's children - If I see a child behaving badly, I find myself thinking 'I wonder if they're on the spectrum', so I guess it's made me a lot more tolerant.

 

There, I feel better now , Thanks for that

[mossgrove]

Martyn/Diane

 

I see where you are both coming from but I do feel uneasy about what you are saying.

 

I think it is a common misconception that inside each Autistic person there is a 'Neuro-Typical' person trapped by autism and if you could somehow break the bounds you would somehow release that person to be normal. Many companies get very rich by peddling hopes of a cure.

 

Inside every Autistic person is an Autistic person. Autistic people are different, not NT people suffering from an illness. I am sorry if ths sounds harsh but if you take the Autism away you will end up with a different child, not the same child without the autism. What I want for my two Autistic children is for them to be helped to overcome the difficulties and prejudices, and the judgements society makes about them. That doesn't mean that the whole situation doesn't get me down sometimes, of course it does. But many Autistic people see thenselves as different not afflicted, i.e. they do not wish to be 'normal' and may be upset by what is being said.

 

Simon

Edited August 13, 2008 by mossgrove

[Lynden]

I think autism has made me more tolerant and understanding. I was fairly so before but its definitely made me more aware that life isn't black and white. I do agree with Simon though - Logan would be a completely different little boy without his autism and I'm not sure I'd want that. I do wish we lived in a more tolerant and understanding world though as I see the problem not with him, but with people around us.

 

My hubby is aspergers also and although I see him struggle sometimes socially - I wouldn't change him either.

 

Lynne x

Edited August 13, 2008 by Lynden

[bid]

Everything Mossgrove has said, and...

 

Autism hasn't 'changed' me as a person because I am autistic, too, so it is as much a part of me as my gender or my eye colour!

 

Bid

 

I do think, though, that parents go through a whole range of emotions when their children are young and especially around the time of diagnosis <'>

Edited August 13, 2008 by bid

[Tally]

Even though I am the autistic one, I also have days when I would like to have the autism drawn out of me so that I could just do normal things without finding it so hard. I think life would be easier if I wasn't autistic. But I do OK really. I have a job. At the moment I live independently. The things putting that at risk are not the autism. I even married, and the reason that failed was not autism either. I have two cats and have helped them overcome a history of abuse (well, getting there anyway).

[Zosmum]

Hi All

 

A lot of wat I feel, along with the sadness and anger, is guilt

Guilt because I don't fully understand what goes on inside Z's head and because I can't always get through to her, I don't understand how she has almost no emotions and the biggest guilt of all is because I'm her mum and I can't make this better

 

Zosmum

[bid]

Hi Zosmum,

 

It's likely that your DD does have emotions, but has great trouble identifying/naming them...this is a very common difficulty for people on the autistic spectrum. I struggle alot with this myself.

 

bid

Edited August 14, 2008 by bid

[LicklePaulie]

Hi Zosmum,

 

It's likely that your DD does have emotions, but has great trouble identifying/naming them...this is a very common difficulty for people on the autistic spectrum. I struggle alot with this myself.

 

bid

Ditto and amen to that!

[Zosmum]

Hi Bid and LicklePaulie

 

Thanks for that, I was begining to think she was just emotionless

 

Zosmum