What social pressures do families with autism face?

[Charlie Smith]

Hi,
I am doing a research project into potential social pressures families face due to having a family member with autism. If you are interested, please feel free to participate.
Thankyou.

Here is the link to the survey-

Google Forms: Sign-in

 

[Crossbreed]

As far as I can tell, it depends on two things:

1. the nature of one's local NT social structure &
2. the severity level of the autistic person in question.

ASD1s attempt to mask. ASD2s & 3s do not even know to try (at least, in our family).

@Charlie Smith, what country are you in?

 

[Kayla55]

I'm no good with surveys....but if I can say this

Money was our issue. It's upsetting for any parent to feel can't afford medical for a child. The state does provide but the service is not same, waiting time to see our occupational therapist. We were only given visual sensory tests and when I looked at prices for private I was terribly upset. Tanya our OT was awesome gave us homework to DIY, but it's not same. Also speech is charged per session, most of these speeches are outdated and a painful experience.
I would have being happy for students who doing practicals to offer us more than we got, I would have felt much better as often the state or even teachers not really interested in your problems or don't act in best interest of child. This could be a sort of medical oath contribution to autistic children.
It would changed our attitude as I'm sceptical to this day about the professional we visit and my perceived few of their prejudice during our difficult time preparing for school readiness.

 

[tazz]

Here is the link to the survey-

Not sure if everyone has this issue but when I follow the link I get this message on screen:

"You need permission. This form can only be viewed by users in the owner's organization. Try contacting the owner of the form if you think this is a mistake."

 

[Outdated]

Not sure if everyone has this issue

We get a lot of these surveys in here all the time. Mostly from the UK for some reason. It's usually students too young to realise that there's a whole world of people in here so they never tell you what country they're from, they just assume everyone lives in England.

About half of them seem to set their surveys up with shoddy permissions enabled and no one can get in.

 

[Kayla55]

Since most autistic community doesn't hold down jobs, money is always an issue when you have children let alone extra expenses on spectrum. I think NT parents tend to have medical aid and still excess.
It relieves the dignity theme in my life.
When Swiss declared cashless society I was already holding down jobs in IT sector for 10 years, but I suppose my salary was mediocre.
I remember day I stood in front of mirror screaming inside at myself, now the movie 28days was old already but when I was a teen I was the un-survivor, I wasn't on drugs i was underweight from autism, I was shy nervous wreck...I struggled at work to hold tray of glasses, I Shaked and often dropped things til lost my job.
That's when I decided to volunteer community upliftment programs again, but not for work but for dignity and purpose. To define what is of benefit to society within me, to say it was ok I didn't have fancy car and big paycheque. To say what is important criteria in a person to be considered a benefit to society.

I survived my 28 days but from depression not alcohol, it was strength I was going to need to get my boy through system. Hearing no, persisting. Shrugging off nose in air, it only made me stronger. If I never had belief in myself I would never have survived.

 

[Kayla55]

This is me surviving martial arts class dropout, and watching everybody else become a success.
So me believes space for others like me, to just believe in yourself

 

[selena]

Are there different definitions of "social pressures" I don't know about? This reads to me like an invitation for non-autistic people to feel sorry for themselves because someone in their family (likely their child) is autistic.

 

[Kayla55]

Years ago I joined a then bi-polar support group ND reason was I never spoke to my therapist because I couldn't call her on Saturday I was manic, and by Monday most episode had passed and I'd found coping strategy alone.
Family support does same thing, I can't wait 2 weeks for appointment when they doing this to us and legally getting away with it. The laws are there but implementation is different.
But I'm accepting it now and I've realised through other online stories that inclusion at schools regarding autism doesn't always work. That is fine but that's not how I perceived the initial comments from principle, it attitude and how you break spirit of parent/child.
To make matters worse the German drives down the road fast everyday with his Audi TT and it must be butterfly effect but it's then facing my dad knowing we worked 10x harder for things yet look less than half as good,
I know it's wrong but I wish they could try so hard to balance for day and have someone else steal all their progress and come back and in true parrot fashion repeat my words of wisdom as in belief he came up with strategy that they using to look good.
It's almost like Montessori was developed for children with disabilities but regular kids attend and now we told we can't keep up.

 

[Gerontius]

How about some social pressure so researchers can know when to leave?
I'm mostly joking.

 

[Charlie Smith]

Hi,
I am doing a research project into potential social pressures families face due to having a family member with autism. If you are interested, please feel free to participate.
Thankyou.

Here is the link to the survey-

Google Forms: Sign-in

Hi,
Thank you to everyone who responded to my original post and for those that shared their personal experiences. I have now changed the permissions so that anyone who is interested in filling out the survey is able to do so. Absolutely anybody with any kind of experiences relating to my question are very welcome. I am from England but this questionnaire is open to any country of residence.
Thank you!

 

[Outdated]

I am from England but this questionnaire is open to any country of residence.

A quick and easy questionnaire.

 

[Crossbreed]

Completed.

 

[kenaij]

You can use my story if you want. I haven`t been officially diagnosed however. But I score really high on online tests and my wife sees most of the same connections I do. My father has also been diagnosed somewhere in the past 2-3 years.
So as a child I did not know I might have autism. I was always a little different from other kids. In kindergarden all the kids would play and I would just sit there besides the teacher in my own world or looking around at bugs etc. While at home I was really active and present. Besides this my parents didn`t really have a lot of problems with me. The problems started in my teens. School was just too much for me at most times. I often skipped class towards my later years to just sit in a park or atleast be away from the crowd. Back than I had really bad skin and I blamed most of it on that. My parents really worried about me. My father asked me if I was gay, since I often went to parks in the middle of the day, and also to a park where gay people would meet up. Which I did not know btw. They often did not understand why I would always be in my room and did not partake in most activities people my age did. We never went to the doctor to check for autism thou. But looking back so many things fall into place and I can see they really had a hard time figuring out why I did what I did. Eventually also thinking it was just because of my skin. I looked down because of my skin. To this day I have problems maintaining eye contact and I really have to force myself to do it. So I can say now it was never the reason for not doing it.

Very long story short. For parents who do not know about autism, or who have a kid who has high masking skill it can be really hard to figure out what you kid needs and where to start in helping them.
After my father was diagnosed he actually already put a lot of things together from when I was young. It was only when I started to see autistic traits in my son (now 5) that I realised a lot of things from my past could be explained with high masking autism.

Currently figuring out if I want an official diagnosis. If only to take the uncertainty out of it.

Hope this had value for your research.