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

Hastentoadd

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

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

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.

Sleeper12

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.

Sleeper12

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

[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

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.

Tow

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

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

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

[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.

Sleeper12

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

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

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

Can't believe Mia is 17! Time flies!

Wibbs

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

[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

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

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.

Sleeper12

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.

Sleeper12

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

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

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

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

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

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

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.

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

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

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

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.

Widdershins

I doubt anyone would receive an official diagnosis of autism if they're not autistic. I remember a relative going through the process. I know of people who self diagnosed not only themself but their whole family.

babyboom

On the subject of misdiagnosis, my son was assessed and diagnosed as autistic at less than 2 years of age by a well known Professor despite sleeping through the whole assessment. His diagnosis seemed to be solely based on the fact that he liked to line his toys up in a row, something my other kids did too. He suggested that he be enrolled in a specialist unit.

Thankfully, I had severe reservations about his diagnosis and with the help of the HSE speech therapist had him reassessed under the Under Five Early Intervention scheme. He is not autistic but has a learning disability and a speech and language disorder.

There could be many parents out there, with only the best of intentions for their children, who just accept the first diagnosis they are given. My friend's son is autistic. An absolutely beautiful child who, at six, is completely non verbal and a bundle of energy. His behaviour can be very challenging and my heart goes out to her. The contrast between her son and mine is huge yet they were both initially diagnosed with the same condition and that is a dangerous thing in my opinion.

somefeen

Widdershins wrote: »

I doubt anyone would receive an official diagnosis of autism if they're not autistic. I remember a relative going through the process. I know of people who self diagnosed not only themself but their whole family.

Seems like an unfortunate side effect of raising awareness.
People hear a few symptoms which are condensed and simplified and begin seeing it in themselves or dismiss the condition as not being real.

take everything

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.

I'm also in two minds about this point but I do feel sometimes that thinking about personality/mental disorder/aspergers (or even things like psychosis and depression) as on spectra (or dimensions intersecting, if you like, to give the full person) isn't that unhelpful.

Because what I truly hate is the categorisation/the putting in a box/ the "othering" of that person. It's a fundamentally social/human thing to do I always feel. This thing of ”you're that, I'm this, at least I'm not like that, an ego thing". Probably not explaining that well.

Personality traits are dimensional. A bit obsessional. Very conscientious. Not that agreeable. Not really schizoid. Quite extrovert.

Why not other aspects of the psyche.
Now of course autism is different. It's more hardwired.
But still arguably on a spectrum (and remediable to a degree with the right support).

But stuff like Aspergers/social anxiety/introversion.
Often mixed up together. And not teased apart properly and so the social labelling/diagnosis sometimes can be clumsy. And let's be honest, there's still an "other"ing of people with any of these three things.

Bit of a rambling post. Just my 2c.

take everything

TheZenMonkey wrote: »

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



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.

Read Neurotribes as well. Silberman, who worked for Wired (IIRC) is gay and I like how he talks about ASD now is not unlike how homosexuality was twenty years ago. Misunderstood, and "other" ed so to speak. And really only starting to be properly understood.

But it's a book that affirms the positive aspects of ASD.
Autism and aspergers have a strong genetic component and I have a theory that aspergers is something that will be selected for more and more as we advance (technologically), becoming a necessary trait. It'll be interesting to see how these traits interface with (remedial) social influence in the future.
Whether like homosexuality it will be about society adapting to it and seeing its positive aspects and understanding it more. And what parts of it need to be "improved" and what parts are just more quirks of humanity.

Edit: remedial not remediable.*

*dies of shame

Windorah

neonsofa wrote: »

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.
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I haven't had a chance to sit down and read this whole thread but will do later. This post instantly stood out for me. Everyone needs a method of communication-speech, lámh, PECS, communication boards, switches etc. The professionals working with this individual HAVE to give him/her a method of communication. Insist on it!!! And keep working to find something that clicks. I hope you don't mind me saying that neonsofa. I know if I couldn't communicate I too would be exhibiting behaviours that challenge and meltdowns as would the vast majority of people.
On a side note the Welcome to Holland poem is lovely!

neonsofa

Windorah wrote: »

I haven't had a chance to sit down and read this whole thread but will do later. This post instantly stood out for me. Everyone needs a method of communication-speech, lámh, PECS, communication boards, switches etc. The professionals working with this individual HAVE to give him/her a method of communication. Insist on it!!! And keep working to find something that clicks. I hope you don't mind me saying that neonsofa. I know if I couldn't communicate I too would be exhibiting behaviours that challenge and meltdowns as would the vast majority of people.
On a side note the Welcome to Holland poem is lovely!

Oh it's not from a lack of trying! They constantly try. Nothing wrong in what you said.

alibab

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

He is not making a terrible mistake in fact the opposite. The prof in Dublin labelling every child for 350 euro is a huge problem and is doing a disservice to children who should be properly assessed using the multidisciplinary approach . I have seen midiagnosis and abuse of the social welfare system from people who pay 350 and are able to get a diagnosis without barely being looked at . Thankfully this is starting to be changed and HSE diagnosis etc are needed . There are plenty of reputable ways to get a private diagnosis which is multidisciplinary but for some reason people don't want to know about this .

For clarity I have 2 kids on the Autism spectrum. Both went through extensive assessment of needs multidisciplinary assessments under the HSE over a eight month period to be diagnosed. It was a positive experience if not lengthy and took patience . Both my kids are opposite ends of the spectrum so I can see from both ends but with respect you meet one child with Autism and no 2 presentations are the same . A multidisciplinary team is needed to enable to see the areas that each individual needs help with etc and this cannot be achieved in a half hour tick box exercise .


I am lucky I got early intervention and both my boys are doing well I had to take 5 years out of work a career break to work solely on early intervention and i am grateful that I was able to do that . I live with Autism every day and altough awareness is improving believe me we have a way to go .

eviltwin

DEFTLEFTHAND wrote: »

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

Yes you can. Some people are put through hell from their kids, unconditional love doesn't mean putting up with dangerous or abusive behaviour.

evolving_doors

Mountainsandh wrote: »

.....

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.

Well I wouldn't discount the private route. Many of the Ed. psychologists have public AND private clients. I think the HSE might have a list of all the Ed. Psychs who are registered with them, we use one in the school but I don't know if it's available to the public.

BTW it's becoming harder and harder to get our students assessed in the public system as many of the Ed.psychs. are leaving because private pays more.

I'm presuming you don't need an Ed. Psych to get a diagnosis any psychologist should do. But I think the Dept of Ed will only recognise reports/applications from Ed psychs. Someone could clarify that for me.

alibab

evolving_doors wrote: »

Well I wouldn't discount the private route. Many of the Ed. psychologists have public AND private clients. I think the HSE might have a list of all the Ed. Psychs who are registered with them, we use one in the school but I don't know if it's available to the public.

BTW it's becoming harder and harder to get our students assessed in the public system as many of the Ed.psychs. are leaving because private pays more.

I'm presuming you don't need an Ed. Psych to get a diagnosis any psychologist should do. But I think the Dept of Ed will only recognise reports/applications from Ed psychs. Someone could clarify that for me.

Yes that is true . I needed a educational psychology report for secondary school . Despite HSE diagnosis there was simply no way I was going to get it done on public system. I contacted HSE to recommend someone that I was sure was good and would be accepted. It wasn't cheap but it was a excellent report done over a good few hours with my child and it described him to a tee . She also diagnosed dyslexia at the time which hadn't been diagnosed previously although it wasn't any shock .

alibab

Anyone can contact the HSE and they will recommend a reputable psychologist private whose diagnosis they are willing to accept. This will also be accepted by the department of education. There are centres that specialise in multidisciplinary assessment and many use the ADOS assessment which is what the HSE want used as a overall diagnostic tool .

hairyslug

Our 2 youngest are moderately/severely autistic, we are lucky that they are in a fantastic school and they have progressed so far, but being honest with ourselves, independent or even semi-independent living will likely never be an option. This is out main worry, in that as we get older, we will not be able to care for them.

Mrs OBumble

DEFTLEFTHAND wrote: »

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

It's your child, unconditional love.

Not correct.

As at whatever date this report was compiled, there were 6258 children in state care. Of these 93% were in foster care - while means that 7% = 438 kids were in institutional care of some sort.

Many of these will be children with severe disabilities, whose parents have reached their last straw.

I cannot find any official sources, but have been told by special education professionals that the majority of severely disabled children end up in state care: for every heartwarming story of parents who don't ever give up, there are several parents who did give up, because it was simply too difficult.

Spider Web

eviltwin wrote: »

Yes you can. Some people are put through hell from their kids, unconditional love doesn't mean putting up with dangerous or abusive behaviour.

Aye, it's an inane platitude - topped off with "I love my kid" (most people do) as if that's relevant. And his child is only five - of course you're only going to love a little boy that small. And hopefully he'll have a happy and trouble-free life (more than likely he will).

"I'd love my child no matter what they do" just means run of the mill wrongdoings.

Extreme I know, but anyone who wouldn't have reservations about their child if they became a murderer or child abuser, is blinded.

Nobody should forgive heinous behaviour like that just because of blood links.

neonsofa

Spider Web wrote: »

Aye, it's an inane platitude - topped off with "I love my kid" (most people do) as if that's relevant. And his child is only five - of course you're only going to love a little boy that small. And hopefully he'll have a happy and trouble-free life (more than likely he will).

"I'd love my child no matter what they do" just means run of the mill wrongdoings.

Extreme I know, but anyone who wouldn't have reservations about their child if they became a murderer or child abuser, is blinded.

Nobody should forgive heinous behaviour like that just because of blood links.

Exactly. And paired with the fact that a lot of parenting generally is thankless but rewarded with little milestones and smiles and affection, it can become extremely tiresome when the milestones are sometimes few and far between, and even then they can be a result of your own blood sweat and tears, your child hits out in frustration constantly, no cuddles or affection... it's a tiring and draining job at the best of times. That's not to say there are no rewards or no positives but it's a lot easier to feel unconditional love when you feel it being returned, I'd imagine it's very difficult at times when you're basically a punching bag the majority of the time or whatever other difficulties you experience. And I wouldn't judge any parent for feeling that way.

boardsuser1

My youngest child is currently awaiting assessment for ASD.

Whilst a doctor previously assessed her, her expertise isn't in that area she admitted.

On trying to gauge whether she had or not she had it, the child refused to cooperate at all.

I have an opinion in relation to my eldest child also but I'll get hammered if i say what I think the mother is up to. (Eldest child from previous relationship)

Sleeper12

Deleted User wrote:

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

We found it very difficult to get someone to diagnose my son because of his age. We tried looking for the name of someone private. All councillors & psychologists pointed to the same woman. I actually got the impression that she was the only person doing this privately for adults in Dublin.

Rita Honan diagnosed my son and yes it's her full time profession. She lectures in Trinity also on the subject. She also has a clinic in Dublin city centre. My son sees a counsellor there @ 140 per visit. This was weekly for the first year or so but is down to every 6/8 weeks now. He was over 18 when diagnosed so everything was private.
There's also a lot to being diagnosed. The session cost 500 & was close to 5 hours inc an hour talking to the parents. This is just the diagnosis. If you need a written report, we didn't as he's an adult, it costs more but it's hugely time consuming for Rita.
After the 4 to 5 hours she really knew my son. You could hear the penny drop several times as she explained things to us about things we always just thought were his little foibles.

Stonedpilot

As regards aspergers couldnt anyone bit eccentric be diagnosed with that?. I know guy who got diagnosed with it who wanted to get diagnosed as he could claim disability with it. Not saying he doesnt have it but he is as sharp as a butchers knife this lad and was happy to be diagnosed. Hes an artist and wanted the free travel pass to get around to events and smoke weed.

This is ONE example not speaking for everyone.

Sleeper12

Stonedpilot wrote:

As regards aspergers couldnt anyone bit eccentric be diagnosed with that?. I know guy who got diagnosed with it who wanted to get diagnosed as he could claim disability with it. Not saying he doesnt have it but he is as sharp as a butchers knife this lad and was happy to be diagnosed. Hes an artist and wanted the free travel pass to get around to events and smoke weed.

Aspergers doesn't exist as such any more. It is now officially part of the autism spectrum. This changed 4 or 5 years ago. I'd be wary of anyone giving a fresh diagnosis of Aspergers as it is suggest that they're are out of touch.