What longterm outcomes do you worry about for your children?

[halfadoc]

Hi everyone,

I'm a UK medical student and Im currently undertaking a research project about ASD. As part of my study I am trying to design a cohort follow up study which will look into trying to find more factors which predict a childs longterm outcome at the point of diagnosis (as I'm sure you are all aware there are very few known factors which accurately predict this at the moment).

 

As I want to make sure the study measures outcomes that are important to parents (i'm not going to suggest any examples here as I don't want to bias your answers) I would be really grateful if forum users who are parents to children with ASD/ Aspergers/ Autism could reply with factors which worry them/ they would like to know what to expect about their childs future (both now, and things you worried about when your child was first diagnosed).

 

No names will be attached in my study!

 

Thank you for any help you can offer me everyone (unfortunately I've had the idea of asking forum users about this quite late on in my research write up - its in next friday! So I would be incredibily grateful for rapid answers if possible, even if it is a few outcomes that immediately spring to mind and not all of those that you think should be followed up for)

 

Thanks!

[chris54]

Not realy sure this is what you want, But for me the long term outcome I'm hoping for is that my son will grow into an independent adult who has a meaning full life.

[sesley]

same. that he has a happy full filling life. intergrating into life taking advantage of oppertunitys to his benefit as they come.

[oxgirl]

Fears for my son:

 

- being lonely, having no friends

- not being able to work

- being isolated at home 24/7 with nowhere to go

- not being able to have a loving relationship/partner

- being unhappy because of all of above

- being attacked or taunted whilst out on his own

- depression/suicide

- having no-one to love him when we are gone?!

 

~ Mel ~

[Sally44]

Same as above for me.

[JeanneA]

I worry that my son will be lonely although he is currently in a residential home with others similar to him. He is 18.

- not being able to work

- not be able to live independently - as I feel he will always need 24 hour which he currently gets and will need it for the rest of his life.

- not be able to be in a loving relationship with anyone

[chris54]

Fears for my son:

- having no-one to love him when we are gone?!

 

~ Mel ~

 

I think that is probably my biggest fear.

By the time my son is 20 I will be an OAP.

[oxgirl]

My son is twenty next year! When he was little the future seemed so far away, now he's an adult and it's here and not much has changed, tbh, apart from he's bigger and hairer.

 

~ Mel ~

[vikstar]

Hi with my daugh ter i worry about

 

Not being able to live independantly

Being outcasted and alone

That she wont be able to form a loving relationship

That she will never be able to have kids ( not as in have them but to bring them up care for them )

To progress into further education hold down a job

Not to full fill her ambitions she has as a young teenager

 

Vikki

[halfadoc]

Hey everyone, this is really helpful and exactly what I want to know thank you loads everyone who has posted, please keep them coming anyone else who sees this as the more answers the better, thank you

[Sally44]

My son is twenty next year! When he was little the future seemed so far away, now he's an adult and it's here and not much has changed, tbh, apart from he's bigger and hairer.

 

~ Mel ~

 

On a lighter note, and as a female nearing 50 - that could apply to be too - bigger and hairer!!

[Sally44]

Another major worry I have is that my son will be "invisible" to support services.

 

Due to his diagnosis he will probably not go and seek help, or be able to communicate it, or know who to ask or where to go. He may not even know he needs help.

 

And communication with health professionals could also be very difficult if they don't push him for answers. Because if asked, his typical answer is "I don't know" or "i'm fine".

 

He finds it hard to identify if he is ill. He wouldn't be able to answer a question like "how do you feel".

 

He may not be healthy and not eat proper food. He may not know how to cook.

 

He hoards things, and could end up like one of the adults you see on "a life of grime".

 

And all this could be going on without him being on any services radar.

 

I'm trying to get social services involved now. So far [over the last upteen years] they keep telling me that because he does not have general learning disabilities that he does not qualify for help. I am fighting this because as an adult with ASD, OCD, Anxiety, Dyslexia, Sensory Processing Disorder, Severe/profound speech disorder - he is extremely vulnerable.

 

I also worry about him being taken advantage of by other adults that want to use him as a way of getting access to free housing or benefits.

 

I worry about him getting involved in criminal activity by being used by others.

[LisaKaz75]

I worry about him having no friends

 

I worry what happens if something happens if something happens to us

 

I worry what happens when we are old

 

I worry that he will be lonely, that he only seems to interact with us

 

I worry that the 4 walls will become his life

 

I worry about him getting hurt - physically, mentally and emotionally

 

I worry that he will never find a special person to spend his life with

 

I worry that others will never understand him

 

Am sure there are many others, but these are the pressing ones

[chris54]

Another major worry I have is that my son will be "invisible" to support services.

 

Due to his diagnosis he will probably not go and seek help, or be able to communicate it, or know who to ask or where to go. He may not even know he needs help.

 

And communication with health professionals could also be very difficult if they don't push him for answers. Because if asked, his typical answer is "I don't know" or "i'm fine".

 

He finds it hard to identify if he is ill. He wouldn't be able to answer a question like "how do you feel".

 

 

These are worrys I also have.