Autism. Is it all its 'cracked up' to be?

Hastentoadd · 16-09-2017 03:14AM #1

From my own personal experience autism is a very tough thing to deal with. While my son has mild autism, as he only wielded a knife at me a few times, we have got through that stage, and now he alive and I am alive. And he gets to manage life better every day. So today he is not a normal person but he is the most loving/hating person I know. I remember all his loving and forget (not forget, try and rationalize to him) all his hating. And my child is considered only mildly autistic. How parents manage to take care of more seriously autistic children within their own homes is beyond me. I do remember a point when I had been challenged just one too many times with a knife. I was so close to letting him go into welfare. I guess I would have never really done it. I guess the next time would be the last straw. Which is what it is. You can never reach the last straw as it is your own chid

DEFTLEFTHAND · 16-09-2017 06:51AM

You can never reach the 'last straw' with your child.

It's your child, unconditional love.

I've my firstborn of 5 who started school this year. I don't care what he does in his life, I will always love him, no matter what

16-09-2017 07:17AM

At the risk of getting pilloried, I wonder about the wholesale diagnosis of autism these days. Obviously pulling a knife is a very serious issue so not for one second doubting you OP, if anything you underplay it with the "mild" reference. But know of kids that are no trouble at all, engaging, endearing, bright...but just have maybe one noticeable characteristic, like shyness, and next thing the parent is on Facebook posting away about dealing with autism and I kinda feel like saying "maybe s/he's just quiet and you're overanalysing".

It's like mental health issues, ADHD etc. in that regard, the net seems to have spread a lot wider. Anyone in law will confirm that the numbers who turn up in Court waving a doctor's cert to attribute their criminal behaviour to some underlying "condition" or "issue" has gone way up, when the cynic in me wonders are at least some of them just arseholes.

Lots of people seem to actively seek out the drama of some diagnosis these days, like half the country developing an issue with gluten to join the genuine plight of the coeliac.

16-09-2017 08:17AM

Deleted User wrote:

At the risk of getting pilloried, I wonder about the wholesale diagnosis of autism these days. Obviously pulling a knife is a very serious issue so not for one second doubting you OP, if anything you underplay it with the "mild" reference. But know of kids that are no trouble at all, engaging, endearing, bright...but just have maybe one noticeable characteristic, like shyness, and next thing the parent is on Facebook posting away about dealing with autism and I kinda feel like saying "maybe s/he's just quiet and you're overanalysing".

Maybe some parents will diagnos it themselves. Obviously the results of that are meaningless

To get an official diagnosis they give a bloody good test. If I remember correctly my son was tested for 3 or 4 hours. Then there was another sit down with the parents. For an hour or so.
I cost 500 euro to have him tested. The lady that tested him does nothing else but autism work.

16-09-2017 08:28AM

Sleeper12 wrote: »

To get an official diagnosis they give a bloody good test. If I remember correctly my son was tested for 3 or 4 hours. Then there was another sit down with the parents. For an hour or so.
I cost 500 euro to have him tested. The lady that tested him does nothing else but autism work.

I'm not for one moment referring to your personal situation.

But the fact that people are making good careers solely out of testing for autism kinda reinforces my point.

People are making careers out of lots of issues these days, like the mental health or diet issues I mentioned above, Counsellors everywhere, life coaches, yoga teachers dispensing advice on wellness, the Happy Pear twin/Pat Divilly types who can't sell a carrot or go on a treadmill without linking it to mental health. Is there any chance that, instead of deepening the focus and understanding, we are simply broadening the numbers involved?

pjohnson · 16-09-2017 08:41AM

[Deleted User] wrote: »

I'm not for one moment referring to your personal situation.

But the fact that people are making good careers solely out of testing for autism kinda reinforces my point.

People are making careers out of lots of issues these days, like the mental health or diet issues I mentioned above, Counsellors everywhere, life coaches, yoga teachers dispensing advice on wellness, the Happy Pear twin/Pat Divilly types who can't sell a carrot or go on a treadmill without linking it to mental health. Is there any chance that, instead of deepening the focus and understanding, we are simply broadening the numbers involved?

Pat Divilly was always into fitness?

rob316 · 16-09-2017 08:41AM

My son has autism with a moderate intellectual disability. He's the greatest person I know he's so different and amazing. I worry for the future always as he can't control his emotions and is only 8 right now. It's very difficult at times but it is what it is, it's a part of him.

16-09-2017 08:43AM

Hi wife used to look after two autistic boys. One was mildly autistic and he was the problem, your story of wielding knifes rings very true. I have seen the outcome of his rages, which were mainly directed at this father. Luckily a solid wooden door would take the brunt of it. I have no doubt he was quite capable of killing him in a rage. In the end his father moved out of the house. To be honest when these started I worried about her working there. The other boy had bad autism, so he lived in his own world, happy enough. Certain things upset him, but it was reasonably manageable.

Wibbs · 16-09-2017 08:44AM

Deleted User wrote: »

It's like mental health issues, ADHD etc. in that regard, the net seems to have spread a lot wider.

The net has been cast wider alright. That's not in doubt. Whether that's down to better diagnostic tools or over diagnosis or even laziness on the part of some medical professionals or a combination of the aforementioned is the debate.

However mental health is a huge umbrella that covers a wide range of conditions. With autism the diagnostic tools are well defined and the condition's signs and symptoms are very diagnostic, so a professional diagnosis there is pretty damned trustworthy. Schizophrenia would be another mental illness where there's little enough room for manoeuvre on a diagnosis.

Conditions like anxiety and depression can be symptomatically vague in mild cases so they might be more a grey area. It would be my personal belief that they are. It can be unbelievably easy to get a diagnosis of depression from your average GP. I've seen this up close with friends and relatives with a few different GP's with an equally easy script for antidepressants of the SSRI type handed out. It reminds me not a little of a time when antibiotics were doled out for every sniffle and see where that led us. So yeah in that end of the spectrum I would be of the personal opinion that there would be more "gluten intolerance" types than actual coeliacs.

TheZenMonkey · 16-09-2017 08:45AM

Deleted User wrote: »

Is there any chance that, instead of deepening the focus and understanding, we are simply broadening the numbers involved?

That is literally true when it comes to autism. A number of years ago they did broaden the criteria, which has been a huge benefit to people with much milder forms of autism like Asperger's. A lot of kids who were diagnosed as learning disabled, dyslexic, borderline personality disorder, etc. are now understood to be not neurotypical, and they can get the right kind of help.

Unfortunately this has been understood by too much of the general public as simply "autism rates are rising," leading to things like the rise of antivaccine pseudoscience as well as over-diagnosis of self or children as you say. It is definitely more likely these days that your example shy, introverted kid might be misunderstood as autistic by friends or parents.

But the problem isn't with the science. An "autism expert" may well know exactly what they're doing and their diagnoses may be accurate and helpful. There's no way to generalize; it depends on the individual. Every aspect of health has its legitimate experts, its questionably self-taught "experts", and those who knowingly flaunt science and ethics to make a buck, from MS to AIDS to cancer. The less understood the illness or condition, the bigger the flock of quacks.

So to answer your question, I would say that those two things are not mutually exclusive. The legitimate numbers have been broadened, there has also been a rise in iffy or flat-out bad diagnoses, and there have also been many advances in our knowledge and understanding of autism.

evolving_doors · 16-09-2017 08:50AM

[Deleted User] wrote: »

I'm not for one moment referring to your personal situation.

But the fact that people are making good careers solely out of testing for autism kinda reinforces my point.

People are making careers out of lots of issues these days, like the mental health or diet issues I mentioned above, Counsellors everywhere, life coaches, yoga teachers dispensing advice on wellness, the Happy Pear twin/Pat Divilly types who can't sell a carrot or go on a treadmill without linking it to mental health. Is there any chance that, instead of deepening the focus and understanding, we are simply broadening the numbers involved?

For autism especially it needs a pretty thorough consultation before any Psych. would put their name to it.
Psych. reports are often read by other professionals as the child progresses through the system, so they'd be doing themselves a disservice by taking money for bogus assessments.

By broadening the numbers I suppose it can create more of an awareness. But it has to be emphasised that autism is a spectrum from very mild to severe. Half your friends and family might have some autistic tendancies but just brushed off as 'quirks of their character'.

Mental health has to be considered, But there are a lot of quacks out there who hint at 'fixing' the person's negative traits, as opposed to focusing on what they can do already.

16-09-2017 08:51AM

Deleted User wrote: »

I'm not for one moment referring to your personal situation.

But the fact that people are making good careers solely out of testing for autism kinda reinforces my point.

People are making careers out of lots of issues these days, like the mental health or diet issues I mentioned above, Counsellors everywhere, life coaches, yoga teachers dispensing advice on wellness, the Happy Pear twin/Pat Divilly types who can't sell a carrot or go on a treadmill without linking it to mental health. Is there any chance that, instead of deepening the focus and understanding, we are simply broadening the numbers involved?

I fully agree with you. I'm autistic myself but as we'd never heard of autism when I was born 50 years ago we just had to plod along as best we could. I remember my first job after leaving school at 14. A manager singled me out & gave me a right telling off in front of everyone for not looking at them in the eye when they spoke to me. It was 25 years after that before I found out I was autistic. Obviously I'm on the milder end of the spectrum. Myself & my son have no violent tendencies though my son used to punch himself quite hard in the head years ago. I've worked everyday of my life yet 80% of autistic people are unemployed so again I'd be on the milder end

I actually believe that everyone is possibly autistic or somewhere on the autistic spectrum. You can see a little bit of it in everyone. I think these "nut job" councilors are diagnosing people that may well be very slightly on the spectrum. I do believe that the real professionals wouldn't be so quick to diagnose.

OP we,re getting away from you. I don't know what to say to you. Try get respite. Try get a few days just you & the other half

neonsofa · 16-09-2017 08:55AM

A family member of mine is a person with profound autism. There is a way I am supposed to say it that is not offensive/more pc but I don't think I've said it correctly so apologies if that is a non pc way to say it. I refer to the person as their name so I don't use the terms often! The person has severe/profound autism- non verbal, severe melt downs, no sign/lamh/pecs communication, other learning difficulties, the whole shebang. They are also the most....feeling person I know. It's tough for the parents and I know they find it tough when it is high functioning autism that is represented on tv- the genius kids that are a bit socially awkward, that kind of thing.

I have all the respect in the world for parents who take care of their children with autism- they do it out of duty and love for their kids, I know that, but it's a thankless and tough job. I think nearly everybody who has a child diagnosed with autism has read the poem but for anybody who hasn't, I would recommend reading Welcome to Holland. All the best op.

Outlaw Pete · 16-09-2017 09:09AM

Have a 39 year old sister who is autistic and who I am a carer for once a week. To say the landscape has been changed with regards to diagnosis would be the understatement of the century. Mentally Handicapped was generally the umbrella that all autistic children were thrown under back in the 70's/80's (unless they were severely physically disabled also and then they tended to be better diagnosed.

As for schooling, St Michael's House really stemmed the tides back then. Had friend's with siblings with Down Syndrome who ended up being collected daily by them daily along also with the autistic "Mentally Handicapped" kids. Tbh, bad and all as they were, they were pretty much the lucky ones as many such kids who's parents passed away and who's siblings didn't want to know, would often end up in mental homes like Portrane.

No idea if autism is over diagnosed today as I that's not an age group I have much to do with these days and tend to only have contact with adults with autism that are in care but I have to say that what I have seen, with regards to early treatment on the back of early diagnosis, has shocked me.

Take for example Keith Duffy's daughter, Mia, I remember around 2002 Keith being interviewed about her and when he described her behavior it was a carbon copy of how my sister was from the age of 3 into her 20s. Stimming, rocking, no eye contact etc but he was talking about her as if that was all temporary and I just felt that while it was admirable that he was doing his best for her, he was, to me at least, being extremely naive, given that in my own experience, and not just with respect to my sister, but almost all kids I knew that went to St Michael's with her..... they really didn't improve too much at all and even in her 30's, my sister has zero eye contact, little awareness of the world around her beyond that of how two or three year old would and is still stimming occasional also.

Well, seems Keith was right to be optimistic to the degree he was and through Applied Behaviour Analysis (ABA), Mia is to all intents and purposes, flying. It's extraordinary how much progress she has made and hopefully the Government will pay attention to her case, and cases like hers, and fund more of these schools which offer ABA. Believe it or not, and Christ does time fly, but Mia is now 17 and doing a course at Trinity.

We slag people off a lot in this country (and most of them deserve it tbf - especially those from the Boyband crop) but Keith has done a lot with regards to raising awareness for Autism over the last 15 years or so and have lost count how many times I have heard that money he has raised has gone on to help families that were struggling to cope and indeed actually into helping some of these schools that offer ABA to keep their doors open. So fair fcuks to him for that.

neonsofa · 16-09-2017 09:15AM

Can't believe Mia is 17! Time flies!

Wibbs · 16-09-2017 09:15AM

While I understand and appreciate your particular life experience, this part I would have extreme disagreement with:

Sleeper12 wrote: »

I actually believe that everyone is possibly autistic or somewhere on the autistic spectrum. You can see a little bit of it in everyone.

This belief that we're all a little [insert mental/personality/human trait here] is a large part of the problem with the increasing tendency to bring everybody into the fold of some medical condition or other and IMO it's beyond unhelpful and its not good science either. It medicalises the human condition. A shy introvert? Yep Aspergers alright. I can see why it's a popular belief. If we're all a little [insert mental/personality/human trait here] then we should extend sympathy to those who suffer from an extreme of that and it may help those with actual conditions feel more "normal" if we're all seen as a little bit whatever.

Stonedpilot · 16-09-2017 09:16AM

[Deleted User] wrote: »

At the risk of getting pilloried, I wonder about the wholesale diagnosis of autism these days. Obviously pulling a knife is a very serious issue so not for one second doubting you OP, if anything you underplay it with the "mild" reference. But know of kids that are no trouble at all, engaging, endearing, bright...but just have maybe one noticeable characteristic, like shyness, and next thing the parent is on Facebook posting away about dealing with autism and I kinda feel like saying "maybe s/he's just quiet and you're overanalysing".

It's like mental health issues, ADHD etc. in that regard, the net seems to have spread a lot wider. Anyone in law will confirm that the numbers who turn up in Court waving a doctor's cert to attribute their criminal behaviour to some underlying "condition" or "issue" has gone way up, when the cynic in me wonders are at least some of them just arseholes.

Lots of people seem to actively seek out the drama of some diagnosis these days, like half the country developing an issue with gluten to join the genuine plight of the coeliac.

Good post Anne Hegarty the chaser from The Chase has Autism.

Knew a very bright lad (artist) who got diagnosed with aspergers: he was delighted as he can get disability and free travel now as he was a broke artist.

Point is two highly intelligent people with autism..
Varying degrees, swings and roundabouts.

TheZenMonkey · 16-09-2017 09:17AM

I cannot recommend the book "Neurotribes" by Steve Silberman too highly. It's won numerous prizes and accolades and is very accessible. (The author is an online friend but I don't get anything from recommending this.) Here's a good article about him from when it came out:

https://www.theguardian.com/lifeandstyle/2015/aug/29/autism-spectrum-steve-silberman-neurotribes-legacy-autism-people-think-differently

Wibbs wrote: »

This belief that we're all a little [insert mental/personality/human trait here] is a large part of the problem with the increasing tendency to bring everybody into the fold of some medical condition or other and IMO it's beyond unhelpful and its not good science either.

This is actually why I recommended the book. It is definitely fallacious to say that there is no such thing as neurotypical. It's much truer that neurotypical people can resemble -atypical people extremely well in many ways, and I agree that in at least those ways it would ideally be easy to empathize with each other.

myshirt · 16-09-2017 09:19AM

Please do not let this thread go the route of promoting ABA. It is disgusting. People need to try understand the world through the eyes of an autistic person, not how you see it, perceive it, or expect it to be. I really don't like ABA, it has broken the spirit of some good kids I've known, it's just horrible, but yeah they don't 'step out of line' as much.

16-09-2017 09:21AM

Wibbs wrote: »

While I understand and appreciate your particular life experience, this part I would have extreme disagreement with:
This belief that we're all a little [insert mental/personality/human trait here] is a large part of the problem with the increasing tendency to bring everybody into the fold of some medical condition or other and IMO it's beyond unhelpful and its not good science either. It medicalises the human condition. A shy introvert? Yep Aspergers alright. I can see why it's a popular belief. If we're all a little [insert mental/personality/human trait here] then we should extend sympathy to those who suffer from an extreme of that and it may help those with actual conditions feel more "normal" if we're all seen as a little bit whatever.

Totally agree with you. I'm not always great at explaining myself. What I was trying to say that if everyone is on the spectrum to some extent then we shouldn't be diagnosing the whole population. We need to diagnose the smaller section that really needs the help.

16-09-2017 09:24AM

Sleeper12 wrote: »

Totally agree with you. I'm not always great at explaining myself. What I was trying to say that if everyone is on the spectrum to some extent then we shouldn't be diagnosing the whole population. We need to diagnose the smaller section that really needs the help.

I think OP is very brave putting this for open discussion in after hours. These tend to start out great but end up with some very hurt full comments. Fingers crossed this is treated as a serious thread & not just a thread to have fun with

Wibbs · 16-09-2017 09:32AM

Another angle I'd like to see explored is the possibility of certain aspects of culture and the influence on the emergence or increased probabilities of certain behaviours including the more extreme end. EG would modern western culture be more likely to increase the prevalence of autism spectrum/depression/anxiety* in people genetically predisposed to it? In much the same way that type 2 diabetes has a string genetic component and is growing exponentially in western cultures but is almost entirely absent in other cultures.

This might explain phenomena like the Silicon Valley spike in autism. Increased likelihood of a genetic component because of the nature of the environment and people from that environment hooking up and having kids, but also non genetic influence of the environment itself. Sort of a reverse Applied Behaviour Analysis environment that Outlaw Pete mentioned.

I would certainly believe that anxiety and depression are heavily influenced by culture and environment and that much of current western culture and environment is the mental health equivalent of excess refined sugar driving diabetes.

*I realise these are very different conditions

Mountainsandh · 16-09-2017 09:32AM

Deleted User wrote: »

At the risk of getting pilloried, I wonder about the wholesale diagnosis of autism these days. Obviously pulling a knife is a very serious issue so not for one second doubting you OP, if anything you underplay it with the "mild" reference. But know of kids that are no trouble at all, engaging, endearing, bright...but just have maybe one noticeable characteristic, like shyness, and next thing the parent is on Facebook posting away about dealing with autism and I kinda feel like saying "maybe s/he's just quiet and you're overanalysing".

It's like mental health issues, ADHD etc. in that regard, the net seems to have spread a lot wider. Anyone in law will confirm that the numbers who turn up in Court waving a doctor's cert to attribute their criminal behaviour to some underlying "condition" or "issue" has gone way up, when the cynic in me wonders are at least some of them just arseholes.

Lots of people seem to actively seek out the drama of some diagnosis these days, like half the country developing an issue with gluten to join the genuine plight of the coeliac.

I'm thanking this while having a little guy who might be diagnosed with ASD traits in the future

They're just little quirks really, maybe they're all just his personality, and there should be no diagnosis made, that would suit me too, but there is the school element and if I want him to have understanding teachers and maybe some useful resources in school, I have to make sure a diagnosis is made if it's justified.

From other investigations with other practitioners (Occupational and other therapists) I know that there is a guy in a county nearby who will diagnose most kids with autism for a fee, down the private route.

I'm sticking with HSE assessments despite delays because I think the diagnoses are likely to be more genuine and worthy.

I do think a lot of parents buy a diagnosis of ADHD or autism these days to ensure a smooth ride for their kid in school, for attention, and shockingly, i know some parent who outside the school gates also directed me to a Facebook group of such Mums tipping each other on how to apply and get home carer allowance on the strength of a mild dyspraxia/ADHD/ASD diagnosis. It was like : "oh, they will fail you the first time, but at the second interview say this and that and you will get it". Eww.

edit : my post above is in relation to all these debatable cases of course, I understand some cases are a lot more definite and wish the parents strength.

SEPT 23 1989 · 16-09-2017 09:42AM

Mountainsandh wrote: »

I'm sticking with HSE assessments despite delays because I think the diagnoses are likely to be more genuine and worthy.
.

you are making a terrible mistake:(

dont wait for them for anything

If you think there is something up go private for assessment and services to help your child

beg borrow and steal to pay for it because you only have a very small window of time to make serious improvements in your child

best of luck

mohawk · 16-09-2017 09:45AM

A close friend of mine works in a mental health hospital. There is a lot of older long term residents in the place who display many of the classic Autism signs stimming, no eye contact, sensory problems etc. They are not diagnosed with Autism but various other mental health disorders. It is heartbreaking when I hear about those patients. They never had a chance to reach their full potential.

My lad diagnosed was at 3 and would be considered mild. Goes to mainstream school and is very smart but his motor skills and social skills need a lot of work. He is now 8 and he has friends who dont seem to care he is different.

If you get a Autism diagnosis in this country you better hope you can afford private therapies or your child will not be getting the early intervention required.

JMNolan · 16-09-2017 09:46AM

SEPT 23 1989 wrote: »

you are making a terrible mistake:(

dont wait for them for anything

If you think there is something up go private for assessment and services to help your child

beg borrow and steal to pay for it because you only have a very small window of time to make serious improvements in your child

best of luck

We were put on an 18 month waiting list for an assessment for our lad. We got it private within a month. Cost €350 as I recall but it immediately opened up access to various services and allowances.

mohawk · 16-09-2017 09:51AM

SEPT 23 1989 wrote: »

you are making a terrible mistake:(

dont wait for them for anything

If you think there is something up go private for assessment and services to help your child

beg borrow and steal to pay for it because you only have a very small window of time to make serious improvements in your child

best of luck

Just on this people most people I have met have gotten both a public and private diagnosis. Public diagnosis works best for schools and resource hours etc. But that is just my experience.

16-09-2017 09:52AM

Are they still mostly only diagnosing it in boys? They found outa while back that girls present different characteristics of it so it's under diagnosed in girls
I thought that was interesting, you'd think it'd be the same

JMNolan · 16-09-2017 09:56AM

Just on that private diagnosis and I'm not sure this is still the case so someone might tell me that it has changed but once you have a private diagnosis you can apply for the "Incapacitated Child Tax Credit" and have it backdated if the diagnosis specifies your child had the condition from birth.

In our case we got almost 10k (3300 * 4) and this pays for a lot of private therapy.

Mountainsandh · 16-09-2017 10:10AM

SEPT 23 1989 wrote: »

you are making a terrible mistake:(

dont wait for them for anything

If you think there is something up go private for assessment and services to help your child

beg borrow and steal to pay for it because you only have a very small window of time to make serious improvements in your child

best of luck

My little guy has already been allocated resources for what we can more or less identify he needs right now, despite the occupational therapist being reluctant to dish out a diagnosis of dyspraxia that she feels doesn't fit well.
He has been partly assessed and the process is underway.
A psychologist put an "exceptional ability" conclusion into the mix, but again I don't think there's an official diagnosis to be made on the strength of that yet.
If I felt he was distressed or very much in trouble I would maybe resort to private assessment, but his school (who suggested we initiate the whole assessment process) are very supportive, diagnosis or not, and he's happy there and doing great.

My experience of the HSE process has been very positive to date, I have the numbers of speech and language and occupational therapists who would see him within a fortnight if needed. Maybe we're just lucky.

I am absolutely not going to "go private" and get an inaccurate but quicker diagnosis slapped on him, I think it can do as much damage as simply waiting to get a worthy assessment.

Mountainsandh · 16-09-2017 10:23AM

mohawk wrote: »

Just on this people most people I have met have gotten both a public and private diagnosis. Public diagnosis works best for schools and resource hours etc. But that is just my experience.

Because of this private guy dishing out diagnoses in three counties nearby, I have been told that local schools require the HSE diagnosis to allocate resources. Don't know how accurate that is.

I work in education and see many children with what I think are inaccurate diagnoses. They do help the child have a smoother ride in school, but in the long term I think a lot of these diagnoses really do not serve the person becoming an adult, and really as a parent, I am concerned about my child's evolution through school, but also their adult life.

Autism. Is it all its 'cracked up' to be?

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