Autism and Me

skankkuvhima

Surprised not to see a thread about the documentary last night. I enjoyed it. I felt it showed people on the spectrum as human beings rather than objects. It must have been tough for the people involved (parents & children) but they came across well. I hope the show starts some form of dialog in the country at how poor services are for people with autism.

I was a bit disappointed with Claire Byrne Live afterwards, didn't really dig into the issues at all.

mynamejeff

good show alright

mrsdewinter

I thought it was excellent. They were all remarkable. The kid who said people talk about autism as if it's something that swoops on children was right. Loads of people regard autism as the very worst thing that can happen to a child. Hopefully, that programme will have given hope to parents who've been given a diagnosis. It was remarkable to hear Fiacre's writing. I actually woke up this morning still thinking about the fact that just a few years ago, he had no way of expressing himself. And now he's writing poetry.

SEPT 23 1989

you could understand Fiacra's violence unable to express himself freely

he needs to get those poems published

Shop40

I thought it was a very informative documentary and I felt emotional watching. I have a young child who although is not officially on the spectrum, has many challenges. It left me with renewed hope for him, that he can find his own path in life despite not classed as "normal".
I too am still thinking of Fiacre, an amazing young man. So frustrating that he can't sit the junior cert or even part of it. I mean if it takes 2 weeks to dictate the answers using letter pointing, just let him do it!! Give him the motivation. The red tape is so cruel.
They were all so inspiring.

downwesht

Fiacre was a special lad.What a shame that there is no technology to help him communicate better.He has a wonderful mind and intellect,a wordsmith trapped in a world alien to us.Lets hope that he succeeds in whatever he desires.As a father of a child with ASD I thought the programme was very good and gave those with the condition a voice.

_Whimsical_

Shop40 wrote: »

I thought it was a very informative documentary and I felt emotional watching. I have a young child who although is not officially on the spectrum, has many challenges. It left me with renewed hope for him, that he can find his own path in life despite not classed as "normal".
I too am still thinking of Fiacre, an amazing young man. So frustrating that he can't sit the junior cert or even part of it. I mean if it takes 2 weeks to dictate the answers using letter pointing, just let him do it!! Give him the motivation. The red tape is so cruel.
They were all so inspiring.

I thought it really illustrated how the dept of Ed here really does not cater to the needs of diverse abilities. It should be easy to allow exceptions for children like Fiacra so their work over the year could be used to achieve a grade state exams, like a continuous assessment. He really, really deserves to have his work and ability recognised the same as everyone else who goes to school. He was so exceptional. It's amazing there isn't more technology to help him communicate too.

The show was fantastic! I couldn't recommend it highly enough. All the people who shared their experience were so generous and so just plain bloody amazing. All people you'd like to have around. I'm still thinking about the family with the twins, really hope their little boy who needs extra help gets it and life gets easier for them.

eviltwin

Really enjoyed it. It was great to see a program that was a positive representation of autism. I thought Hughie, the little lad at the beginning was an absolute legend. I watched it with my son who has Aspergers and he loved seeing other kids like him. I hope it cleared up some of the misconceptions about the condition and helps the public understand the condition a bit more.

seamus

I know there was some criticism online that the show only really displayed high-functioning autistic people, with Fiacre probably being the most extreme case.

But I think it was important for it to not be a showcase of people with extreme difficulties. There is already a wider perception that autistic people are broken, are outsiders and obviously the "weirdos" of society with a mental disability that can't be fixed.

Showing that these are in fact highly intelligent people, but who have difficulty interacting with the world in the same way the rest of us do, should go some way to illustrating that they're not freaks to be marginalised, but equal human beings who require understanding, assistance and compassion.

neonsofa

seamus wrote: »

I know there was some criticism online that the show only really displayed high-functioning autistic people, with Fiacre probably being the most extreme case.

But I think it was important for it to not be a showcase of people with extreme difficulties. There is already a wider perception that autistic people are broken, are outsiders and obviously the "weirdos" of society with a mental disability that can't be fixed.

Showing that these are in fact highly intelligent people, but who have difficulty interacting with the world in the same way the rest of us do, should go some way to illustrating that they're not freaks to be marginalised, but equal human beings who require understanding, assistance and compassion.

I do agree with you. But then again when you mention autism, people tend to think of rain man, or a child obsessed with trains, or Sheldon Cooper- that sort of thing. Not the likes of Fiacre or non verbal people, who are just as intelligent or talented but have no way to communicate it to the world. Not that this takes away from the show, I think it was a great show though for your reasons above.

jameorahiely

downwesht wrote: »

Fiacre was a special lad.What a shame that there is no technology to help him communicate better.He has a wonderful mind and intellect,a wordsmith trapped in a world alien to us.Lets hope that he succeeds in whatever he desires.As a father of a child with ASD I thought the programme was very good and gave those with the condition a voice.

All the children were great. I really felt like sendinh Fiacre down an I pad or startimg a go fund to provide an ipad.

It was a fantastic show, very insightful

Calhoun

Good program but I feel it failed as it did little to show the real problem in the space which is resourcing.

Current waiting lists in Laois for early intervention is 2 years imagine knowing there is something wrong with your child and not being able to do anything.

Quite rich your man Harris talking about equality and rights when he didn't comment on how is own brother hasn't exactly resourced the area.

freshpopcorn

I really enjoyed this last night and I really liked Simon Harris's brother Adam!

Mrs OBumble

seamus wrote: »

.

But I think it was important for it to not be a showcase of people with extreme difficulties. There is already a wider perception that autistic people are broken, are outsiders and obviously the "weirdos" of society with a mental disability that can't be fixed.

Showing that these are in fact highly intelligent people, but who have difficulty interacting with the world ....

Some are, but some aren't, too.

It would have been good to have people from across the spectrum.

Widdershins

seamus wrote: »

But I think it was important for it to not be a showcase of people with extreme difficulties. There is already a wider perception that autistic people are broken, are outsiders and obviously the "weirdos" of society with a mental disability that can't be fixed.

In other words, the ones who are never represented and don't have a voice (literally or figuratively)? Not sure I like that description much either

holy guacamole

Although the plight of those living without the correct treatment shouldn't be played down I couldn't help but wonder how people with autism were treated in this country twenty or thirty years ago.

This really sprung to mind during the clips of Adam Harris as a child; in previous generations, in a society uneducated about autism, he would have just been seen as a disruptive kid and probably punished as a result.

Must have been hellish for those with the condition and their families back in the day.

We can only hope that programmes like this further educate people about autism and that, in time, those diagnosed with it can benefit from this shared knowledge.

clairek6

If anyone has an interest in autism there is an American girl I follow on Facebook Carly fleishman she was once non verbal autism and now speaks about what autism is and how autistic people perceive the world, think she has a few books too.

marklazarcovic

was hoping someone would have helped Fiacre with a tablet or ipad to speed up his responses using predictive text,was clearly frustrating him,or did i miss them saying he could not use one for some reason?


fascinating insight,im sure we all know someone who has autism/aspergers

_Whimsical_

holy guacamole wrote: »

Although the plight of those living without the correct treatment shouldn't be played down I couldn't help but wonder how people with autism were treated in this country twenty or thirty years ago.

This really sprung to mind during the clips of Adam Harris as a child; in previous generations, in a society uneducated about autism, he would have just been seen as a disruptive kid and probably punished as a result.

Must have been hellish for those with the condition and their families back in the day.

We can only hope that programmes like this further educate people about autism and that, in time, those diagnosed with it can benefit from this shared knowledge.

It's still not that dissimilar for families now who are relying on the state for help. After the show last night Claire Byrne Live dedicated a segment to the show and featured some of the families.

They went to pains to get across that the young people featured last night are all the result of having gotten early intervention and years of targeted help that they had to fight hard for.
The parents of Lee, the twin who had more severe issues, told how the school initially refused him a place in the special learning unit and wanted him in main stream ed even though it was obvious watching him last night that would have been impossible.

Another woman mentioned she has two kids with autism, one 5 and one 9, and they get no help at all. She said it's waiting lists just to be put on waiting lists and that's the experience of so many. She said she realised her 9 year olds life and future life chances would be dramatically different by now if he'd got help earlier.

Widdershins

clairek6 wrote: »

If anyone has an interest in autism there is an American girl I follow on Facebook Carly fleishman she was once non verbal autism and now speaks about what autism is and how autistic people perceive the world, think she has a few books too.

Very encouraging story. To think, the difference technology has made for her and many people with Autism.

The Assistinator

As with all these programmes my only hope is that it educates people to not be so judgmental next time they see a child having a meltdown, or getting frustrated, because they can not communicate what it is they want, when out and about.

SEPT 23 1989

For future parents who are reading this thread today or years from now who get this news and are full of worry

Do one very important thing for your child

Dont wait for the state for help

Beg borrow and steal and do things privately

It will pay off

mohawk

The Assistinator wrote: »

As with all these programmes my only hope is that it educates people to not be so judgmental next time they see a child having a meltdown, or getting frustrated, because they can not communicate what it is they want, when out and about.

A few years a work colleague came back from lunch giving out about a child having a tantrum outside a shop because he dropped his Lego and she was furious because the woman looking after the child didn't give out to him as the child was too old to be having a tantrum. My son's play school was around the corner and his minder would of being collecting him around the time she was on her lunch. That child she was giving out about was more then likely my son having a meltdown.

That "bold" kid with the bad parents is sometimes an overwhelmed kid who no longer can cope and needs a release.

Permabear

This post has been deleted.

smelly sock

Hi folks. My son is autistic, non verbal and prone to extreme violent meltdowns. It's a horrendous disability at the best of times.
He's 8 years old now and me and his mother daily have told him down together in order to stop him hurting us and himself.
Trying to get a carers allowance first my wife, his full time carer was a battle. She can't work Nd is providing the state with a service but they didn't want to know.
The state just don't want to know. I regularly see people in the playground avoid us and him as if they are afraid of him because of his sensory overloads. We recently got approved for respite after 12 months waiting!!

I'm sick of this country.

I really feel the programme last night whilst informative and interesting didn't really get into the nitty gritty issues facing families and children with autism. I can only pray for the day my lad can get on a bus on his own or even sit on a main stream class.

He sleeps about 4 hours a night and had to be medicated to do so. He soils the house and gas to be watched intensively as has no sense of danger.

I love my son but would take away his autism in a heartbeat. Things are difficult and are only made harder by having to fight until your worn out for everything he is entitled to.

take everything

Neurotribes by Steve Silberman (used to write for Wired I think) is a good account of the history of autism/ASD and the future of the condition. Might be interesting reading for parents here. It's actually an uplifting account which views the features of people on the spectrum as potential strengths.

It goes into the early work by Kanner/Asperger, looks at high profile people with the condition like the professor Temple Grandin (who was written off as a child), shows how high-functioning autism/Aspergers is really only recently properly recognised and discusses neurodiversity and the idea of seeing Aspergers more like a personality type that society should adapt to and support (rather than the other way around).

Silberman himself is gay and he draws reasonable parallels between the discrimination people with ASD experience and what gay people have gone through.

Good read.
https://www.amazon.com/Neurotribes-Legacy-Autism-Future-Neurodiversity/dp/0399185615

Widdershins

smelly sock wrote: »

Hi folks. My son is autistic, non verbal and prone to extreme violent meltdowns. It's a horrendous disability at the best of times.
He's 8 years old now and me and his mother daily have told him down together in order to stop him hurting us and himself.
Trying to get a carers allowance first my wife, his full time carer was a battle. She can't work Nd is providing the state with a service but they didn't want to know.
The state just don't want to know. I regularly see people in the playground avoid us and him as if they are afraid of him because of his sensory overloads. We recently got approved for respite after 12 months waiting!!

I'm sick of this country.

I really feel the programme last night whilst informative and interesting didn't really get into the nitty gritty issues facing families and children with autism. I can only pray for the day my lad can get on a bus on his own or even sit on a main stream class.

He sleeps about 4 hours a night and had to be medicated to do so. He soils the house and gas to be watched intensively as has no sense of danger.

I love my son but would take away his autism in a heartbeat. Things are difficult and are only made harder by having to fight until your worn out for everything he is entitled to.

Yes, that's why I'm not that impressed when tv shows mainly show high functioning people with autism. Not to say their problems are trivial, far from it, but I reckon it's people like you who would most benefit from more awareness and it's people like your son who need the understanding the most (and the help, which hopefully you will get very soon)

Giblet

My wife is an educational Psychologist who works with children with Autism / Aspergers and Cerebral Palsy. It's impossible to get a job in this country in somewhere like NEPS due to the fact that they simply are not recruiting anyone, as well the difficulty hiring someone from the EU (translations of documents, references from people who don't speak English or have even died). She has been fully vetted and recognized by the DOH, but they just don't have the resources to allow her into NEPS. They pretty much want her to go back under supervision in Ireland for 2 years on our dime! Where though? you have to wonder.

The psychologist:school ratio is truly shocking in this country and it's made harder by the fact that the Government are sitting idle.


http://www.impact.ie/educational-psychologists-call-on-government-to-implement-commitments-on-recruitment/

smelly sock

Giblet wrote: »

My wife is an educational Psychologist who works with children with Autism / Aspergers and Cerebral Palsy. It's impossible to get a job in this country in somewhere like NEPS due to the fact that they simply are not recruiting anyone, as well the difficulty hiring someone from the EU (translations of documents, references from people who don't speak English or have even died). She has been fully vetted and recognized by the DOH, but they just don't have the resources to allow her into NEPS. They pretty much want her to go back under supervision in Ireland for 2 years on our dime! Where though? you have to wonder.

The psychologist:school ratio is truly shocking in this country and it's made harder by the fact that the Government are sitting idle.


http://www.impact.ie/educational-psychologists-call-on-government-to-implement-commitments-on-recruitment/

What the Government do Giblet shouldn't shock us.

This is the same crowd who cut the respite care grant for christ sake. If we rely on them to do anything we'll be waiting.

As your wife probably knows the earlier Autism is identified and diagnosed and the better treatments available when the children are younger (3-8 age bracket ) the benefits are huge. You could go from having a child being totally dependent to being able to live an independent life.

Giblet

smelly sock wrote: »

What the Government do Giblet shouldn't shock us.

This is the same crowd who cut the respite care grant for christ sake. If we rely on them to do anything we'll be waiting.

As your wife probably knows the earlier Autism is identified and diagnosed and the better treatments available when the children are younger (3-8 age bracket ) the benefits are huge. You could go from having a child being totally dependent to being able to live an independent life.

The biggest problem in this country, is not just diagnosis, but as was seen in the documentary, that teachers do not have the tools to handle a child with Autism in their classes. Either they are ignored, or treated like a disruptive child. There needs to be a psychologist available to assess the child and come up with a plan for that child. It's truly shocking.

SEPT 23 1989

the short sightedness of governments is idiotic

spend the money on the child early on and then they have a chance of an independent life,not being a burden on the state in later years saving multiples of what it would have cost to intervene when they were young