Does the guilt ever go away???? :(

[Becaroooo]

Just wondered.

Am feeling that I have failed my ds1 badly.

He is now - finally! - in the process of getting a dx but he is nearly 8 and I have had concerns since he was a baby and I am so angry at myself that I have allowed myself to be "fobbed off" by so called "experts", HVs, GPs and teachers for so long.

Can you get past the guilt?

Everytime I look at ds1 I feel like crying.

Dh doesnt really understand...he is still coming to terms with the fact that ds1 has SN.

HecateTheCrone
Anyone can edit Wikipedia articles.
So provided you have published medical research to support your additions or changes to an article, you can change the article to provide that information to share with all the thousands / millions of visitors to Wikipedia.

So if Wikipedia is wrong then why not become an editor and put it right.

Why don't you do it dolfrog, since it is a source that you respect so much?

Sorry. I realise how blunt that sounds, but it seems to me that parents of children with autism have a lifetime of battling with people's inaccurate assumptions it is exhausting to say the least!

silverfrog

You really do need to read what i have said.
The age of maturation apples to all children.

What you have mentioned is "Undesirable Behavior" by which you mean is for you personally embarrassing behavior, and for the child even more limited means of expression.

So what is your main priority fitting in with your friends or the needs of your child, which your friends should try to understand.

dolfrog, don't try to patronise me.

my child's undesirable behaviours are not at all embarassing to me. I really couldn't care less.

but she does need to live in this world. and at some point, she needs ot live in this world without me.

my absolute priority at all times (and believe me, I have been through a hell of a lot) has been dd1's needs. to the dteriment of our family at times.

I could weep with laughter at your assertion that I must just want ot fit in with my friends (or amybe that should just be weep, tbh) - it's not even worth acknowledging, really.

and please, don't start on any "accept them as they are, all thatis needed is a bit of undestanding" crap.

there are not a lot of people who are going to understand an older child, or a teen, or an adult masturbating whenever they feel like it, or biting whenever they feel like it.

or any one of hundreds of other socially unacceptable things. I am not talkinng about stopping her picking her nose here - I am talking about equipping her with the skills to live a fulfilling and productive life - whatever that may entail for her.

but be realistic, she lives in society, and yes, society will judge her. and one day, I will no longer be here to protect her form that.

the age of maturation has been disproved, btw.

RedNoise
I think you will find that Autism is genetic, and unless you can perform genetic engineering you can not change a persons genetic make up.
Plasticity of the Brain can work to correct some issues but is not able to change your genetic make up.

dolfrog - not all autism is genetic (you do know that there is more than one autism? that it is "just" an umbrella term for a collection of symptoms?)

blimey, if that is your starting point, then it's scary, tbh.

'So what is your main priority fitting in with your friends or the needs of your child, which your friends should try to understand'

and

'I think you will find that Autism is genetic'

Your ignorance is astonishing, but worse than that down right dangerous.

How about life skills, dolfrog? How about the fact my DS1 (4, ASD) has had to be taught to use cutlery, to dress/ undress himself, walk up and down stairs and a whole host of other things via early intervention

Would you like to see how much happier he is for it? Or for the fact that he no longer exhibits much 'undesirable behaviour' (endless screaming/ crying) because he has been painstakingly taught how to communicate his basic needs and wants since the age of 2.

Or should we have left him for another 3/4 years. You don't need evidence (of which there is plenty). It's simply illogical beyond belief to suggest leaving children with serious social/ communication deficits to tread water until 7 or 8. If my NT DD hadn't been talking at 3 I wouldn't have left her to it for several more years.

And not for the sake of fitting in with my friends, funnily enough

The age of maturation as a theory has been replaced with the idea that your brain is no longer as malleable and as such it is harder work to change the course of its development.

That is an arguement FOR early intervention btw.

And not all autisms are the same. Only some of them are identifiable as genetic.

What silverfrog means by 'undesirable behaviour' (I hope she doesn't mind me speaking for her) is behaviour that will cause other people to harm her daughter, put her in prison, or treat her in a way that makes it impossible for her to live in the world with any independence.

It isn't about fitting in with the mothers friends, it is about fitting in with society, just enough to engage with it so that her daughter is able to make her own decisions and pathway through life.

Acceptance of her knocking all the wine bottles off the shelves in a supermarket, masterbating in the park, holding other people's children's heads underwater etc etc. is not good for her or society.

silverfrog

I was not meaning to patronise you, but all of my family have a communication disability, including me. At times many who have my disability can become "Aspergerish" when we have to concentrate to run the multiple coping strategies we need to communicate. This not a behavior issue as many who do not understand our disability assume, but us trying to work around and cope with our communication needs.

Yes there are some behaviors which need to be discouraged, but we also need to increase the public awareness of a wide range of differences that exist, so that we can all become active members of the wider society.

So we need to educate society to that society understands the needs of those who have the various types of disabilities, and how they can best help us cope.

The best thing that 'society' can do to support the needs of children with communication difficulties, is use evidence-based practise and properly fund and train for early intervention, so that children are given strategies to cope with their difficulties early enough for those skills to trigger the expodential learning that it can at such young ages.

red - it's almost as if you know her

actually, in all seriousness, she would have done the first 2, but the drowing one? that owuld more likely be her having her head held under - we have, through early intervention, finally taught her to protest if somehting is happening she doesn't like. beforehand, she owuld calmly and passively accept just about anything - and I have indeed rescued her form being persecuted (although thankfully not being drowned!)

fedup will (hopefully ) agree that dd1 is now far from passive...

on the firends note - anyone who hasn't accepted dd1 is no longer a friend, because frineds (and indeed family) do make exceptions.

but dd1 is not going to be just surrounded by friends and family all her life. she already isn't, at just 6, but htanks to the evils of early intervention, she can access the things she enjoys, rather than being shut away from them for her own safety.

dolfrog i thought you woudl end up on the acceptance side of the argument.

but, it is ok for you to be there. it is not ok for me to be there - dd1 cannot, and owuld not, function without early intervention.

we are not talkng about her being a bit late in developing, or a bit slow in processign (although both those htings are true) - but more a case of, without intervention she would be totally introverted, unable to communicate at all, unable to voice an opinion, unable to pay attention to anything, unable to be happy, tbh.

she is now able to do all of the above, and yet remains severely autistic.

the "aspergerish" end of the spectrum is but a distant dream for her (and I mena that in terms of functioning, not in terms of severity - aspergers is not always "mild", and my brother would describe his as anything but mild - it has all but wrecked his life. he would have benefitted massively form proper intervention, rahter than the "wait and see" approach that was so beloved in the 70s)

I would LOVE to accept. How lovely it would be to accept my ds for how he is, knowing that them what are paid for it, are intervening early and educating him appropriately.

Unfortunately it is the complete reverse. Them what are paid to help, want me to accept that that gap between him and his peers is going to get wider, because anything else requires backing and funding and therefore it is up to ME to educate him to ensure that this happens as little as possible.

silverfrog

The problem here would seem to be that there are multiple types of autism, which as i mentioned earlier have multiple underlying causes.
So we should not be talking about autism per se, but each different type of autism requiring a different type of support need.
Not every learning disability comes under the autistic umbrella, there are a great many learning disabilities which when they are co-morbid with many other learning disabilities. These multiple combinations of disabilities are the underlying causes of autism.

So what we need to do is breakdown the vast autistic spectrum, to the individual disabilities which when in a multiple combination cause autism.

And this where the age or maturation applies, as all children develop different abilities at different times, and a t different rates until the age of maturation. So one childs late development could at an early age mimic some of the behaviors of autism, but they can grow out of them. And some children can be miss diagnosed as being autistic. This almost happened to my eldest son. When he actually has Auditory Processing Disorder and mild Dyspraxia. These are completely seperate issues.

So I think autism is too wide a term to use on a forum because it does not describe the real issues correctly, it is too wide a term.

indigo so sorry you are feeling so down today Wish I could help/advise but am pretty clueless about all this, really.

Red I think that is one of the (many!) aspects that upset me about my ds1's whole situation...people who are paid to help people like my ds1 and myself ignored us or dismissed us. It is difficult to describe the "care" ds1 received without using the term "negligence". Its hard not to feel bitter about that.

I am only speaking from my personal experience, but early intervention (i.e. 2 years ago when I first requested help) would have made a MASSIVE difference to my ds1.

I don't really understand why different types of autism will need different types of intervention.

Perhaps, eventually we can break it down, but it is almost impossible to differentiate autism intervention from mainstream NT intervention as it is. Not knowing the cause is not a good enough reason for inaction.

The fact is, that there are some related therapies that have been shown to increase the life chances of children with autism (look up pivital response training) and as such it is barbaric to deny children these therapies simply because we don't know what caused their problems.

I disagree that autism is the sum of parts of other disabilities. I agree that in some instances it can be. However, again, this is no reason to refuse treatment that has been proven to work.

The important thing however, is to ensure that the therapy used is tailored to that individual child, at the right level, targeting the right skills and uses data-driven evidence-based practise.

How anyone can ever argue with that is quite quite beyond me.

well, that's a fast turn around form "autism is genetic", dolfrog

the main problem is - early intervention is crucial for a child like mine, if she is ever going to be accepted into society in any way.

you saying that early intervention is not necessary, and instead quoting outdated and disproven ideas abot maturation (it was disproven years ago when i was actually studying brain formation and maturation!) is, as Red says, dangerous.

early intervention would have done you (and others at the higher end of the spectrum - whatever spectrum of learning disability) no harm whatsoever.

early intervention is not about creating robots, or "curing" anyone - it is about helping individuals achieve their potential, whatever that may be. the earlier coping skoills and techniques are learnt, the better - why waste years, waiting for something that amy not happen ( the sudden "catching up" that apparently miraculously happens upon maturation)

it's a no-lose situation, tbh.

with severe learnign disability, early intervention can help a child immeasurably. with milder learning disabilities, it teaches coping strategies earlier, and means that the potential for fallout reduces immeasurably.

why on earth would anyone argue against it?

I think you will find that neurology is still investigating how we develop, and unless you fully understand the nature of the problem then is not possible to begin to consider any form of intervention.

I have been working with the leading UK APD researchers at the Medical Research Council, Great Ormond Street Hospital, and the National Hospital for Neurology and Neurosurgery; and they are still trying to understand the causes of APD, and they are no way near discussing interventions. APD is one of may underlying causes of Autism, so I am not too sure you understand APD which is my communication disability enough to even mention interventions.

I think you'll find I am quite familiar with APD, thanks

"unless you fully understand the nature of the problem then is not possible to begin to consider any form of intervention."

this is one of the biggest steaming piles of wank I have ever read (and I've reada few!), and makes me suspect you work for an LA.

that is just a ridiculous notion.

I'll just stop all the intervention my dd is having hten, and lether regress, shall I, and wait until autism is understoof fully before I even try to help her?

PMSL

'I think you will find that neurology is still investigating how we develop, and unless you fully understand the nature of the problem then is not possible to begin to consider any form of intervention'

I'm sorry but that just doesn't make any sense at all. If something works, it works. You can scientifically prove this easily enough.

It really doesn't matter why or how an arm is broken for example, but it does matter how you treat it, and it particularly matters that you do so.

My dad just had a brain tumour removed. They haven't got a clue what caused that either, but thank god they knew how to treat it.

Why EIBI isn't a treatment given by the NHS with all the research behind it but psychotherapy is, is something that really baffles me though.

How on EARTH have you concluded that APD is an underlying cause of autism.

(here I am not suggesting the two are totally unrelated, but I am suggesting it is an incredible assumption to make)

Why for example, can't APD be 'caused' by autism. And what about people like my ds who don't have much in the way of APD.

And as it happens I've been in the National Hospital for Neurology and Neurosurgery too, almost every day for the past 6 weeks including weekends!

Name dropping doesn't impress me much when it is accompanied by such ignorance. In fact, it scares me somewhat.

Dolfrog was the poster who said that teachers all use a one size fits all approach, with no differentiation or nufink. And are thus Bad and Wrong for anyone with additional needs.
So I think he's wrong on this too.
Quoting Wikki as a reputable authority is a bit worrying too.