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

Widdershins · 16-09-2017 10:49AM

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 · 16-09-2017 11:47AM

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 · 16-09-2017 11:48AM

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 · 16-09-2017 11:53AM

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 · 16-09-2017 12:08PM

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 · 16-09-2017 12:23PM

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.
.

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 · 16-09-2017 12:27PM

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 · 16-09-2017 12:46PM

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 · 16-09-2017 01:24PM

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 · 16-09-2017 01:36PM

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 · 16-09-2017 01:59PM

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 · 16-09-2017 02:03PM

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 · 16-09-2017 02:06PM

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 · 16-09-2017 02:16PM

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 · 16-09-2017 02:24PM

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 · 16-09-2017 02:35PM

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 · 16-09-2017 02:42PM

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)

16-09-2017 02:47PM

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 · 16-09-2017 02:52PM

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.

16-09-2017 03:02PM

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.

Malayalam · 16-09-2017 04:41PM

hairyslug wrote: »

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.

That's the thing, autism has become such a wide spectrum, it's almost as if different words are needed to describe it, with autist being reserved for those who are most severely impaired. Autism has become an almost shruggable diagnosis, it is becoming so common. A lot who receive the diagnosis will progress well and live relatively normal lives, thank goodness, but for those like the two young adult children of my sibling who are profoundly autistic an independent or even semi-independent life is almost impossible to foresee. This has a terrible toll on families, working for example as my sibling does, every hour that is possible, and heart-breakingly hard, to amass money and capital, just so that should the parents die their children will not end up in some half-arsed state-run institution. And even so, even if they live until their children are quite old, looking after them as best they can as they do now, still they know a time will eventually come when those children will have to be moved from their known and loving environment into state care. It really is a heart scald.

evolving_doors · 16-09-2017 04:43PM

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.

This is ONE example not speaking for everyone.

Jezz, That sounds like something homer Simpson would do!

Just to add there's a forum here for parents with kids with ASD here http://touch.boards.ie/forum/1648

I also heard RITA hone (honan!) at a workshop for teachers and she was very enlightening.

Mr.Wemmick · 16-09-2017 05:41PM

Mrs OBumble wrote: »

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.

Exactly. Parents who are exhausted with possibly years of sleep deprivation, constant high stress, very little support/help, rarely leave the house; child might be aggressive and, when older, gets bigger and harder to physically manage.. on and on.

Most of us are clueless as to the difficulties.. we should never judge.

boardsuser1 · 16-09-2017 06:34PM

Mrs OBumble wrote: »

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.

My 5 year old child was classed as the bit in bold last week.

Dyspraxia with sensory issues has been confirmed.

All the other hassle under god only knows what title being another.

Yes still in mainstream school but with a full time SNA.

Can't speak properly, still problems with toilet training,attacking other kids is only the tip of the iceberg.

I only hope cope foundation can help her going forward.

However we are prepared for a diagnosis of ASD as all the signs are there.

neonsofa · 16-09-2017 06:36PM

Cork Truck Driver wrote: »

My 5 year old child was classed as the bit in bold last week.

Dyspraxia with sensory issues has been confirmed.

All the other hassle under god only knows what title being another.

Yes still in mainstream school but with a full time SNA.

Can't speak properly, still problems with toilet training,attacking other kids is only the tip of the iceberg.

I only hope cope foundation can help her going forward.

However we are prepared for a diagnosis of ASD as all the signs are there.

I wish you and your (growing!) family all the best.

boardsuser1 · 16-09-2017 06:38PM

neonsofa wrote: »

I wish you and your (growing!) family all the best.

I'll have to go re-reg soon probably.

Most of boards seems to know that bit.

neonsofa · 16-09-2017 06:39PM

Cork Truck Driver wrote: »

I'll have to go re-reg soon probably.

Most of boards seems to know that bit.

New babies are exciting!

Especially 2!

boardsuser1 · 16-09-2017 06:40PM

neonsofa wrote: »

New babies are exciting!

Especially 2!

I totally agree

Double trouble :pac:

16-09-2017 06:49PM

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.

You don't understated I know a young person with autism he appears fine if a little intense when if your are taking to him he has a job ect however what a superficial encounter with him don't show is the the twirling and spinning or constantly being locked out and loosing things the fact that he will never be able to drive a car ect despite being an adult.

16-09-2017 07:18PM

mariaalice wrote:

You don't understated I know a young person with autism he appears fine if a little intense when if your are taking to him he has a job ect however what a superficial encounter with him don't show is the the twirling and spinning or constantly being locked out and loosing things the fact that he will never be able to drive a car ect despite being an adult.

Constantly suffering from anxiety and or depression. Many that appear very calm and laid back are very anxious inside. My son will never drive. He's early 20s & has to ask his sister to count his money for him before he leaves the house. He's probably the smartest in our family yet can't count his money and retain the information.
People even with mild autism look perfectly normal yet they struggle with regular every day stuff all day every day. Lots of little things add up throughout the day. Maybe this is why some think autism is over diagnosed.

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

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