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.

It is worrying if at the same time you are claiming to be a researcher.

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

what on earth would be the point?

so someone could come along five minutes later and change it back? no thanks. I'm not playing.

I know that I am right. I know that my children have done more because they were diagnosed early enough and began a good programme to teach them all the things that nt children learn more naturally.

I think to suggest that you can leave an autistic child locked in their own world until they are 7 or 8 years old before you start to say right, let's see what we can do here then, is laughable and I don't intend to dignify it with a moment more of my time. I certainly won't be trying to fight it out on pointless wiki.

RedNoise

Autism is an observed behavior diagnosis.

So there are multiple medical problems which cause these forms of observed behavior. Or mulutiplr information or cognitive disorders which are the root cause.
Auditory Processing Disorder is about not being able to process what you hear. or not bing able to process meaning from what you hear. And this is one of the many problems which combine to cause many types of autism.

This is about asking the Question WHY something happens, what causes that form of behavior, what information is not being processed, What type or types of natural coping strategies are available.

So a diagnosis of Autism much like dyslexia is only a screening process to begin to discover the real deficits and disorders.

Autism like dyslexia does not cause anything, it is the observable symptom

dolfrog, your last post made a bit more sense. However, you are still making assumptions about what causes autism, and then using that to suggest that autism is the sum of multiple parts. This has not been established. Autism (or some autisms) are just as likely to be entities on their own.

However, even if what you are suggesting is true, that doesn't lead onto the suggestion that early intervention is fruitless.

You have been contradictory in your posts. You say that lots of children who appear to have autism will 'catch up' all on their own (despite there being no evidence for this) and then you say that we should just accept children with autism for who they are, unhappy and dependent.

I wonder HOW children who were 'accidently' dx with autism catch up, and why we should condemn those who were not to a life time locked in a miserable world where they are not understood?

you know what?

when you have an autistic child who screeches and scratches and bites and kicks and smears their own shit on the walls, floor and their face and hurls themselves down stairs and throws themselves on the floor or into the road because you went down the wrong path, please come back and say how leaving any intervention until they are 7 or 8 or doing nothing at all until autism is fully understood, is the best thing.

Until then, you have no idea what you are talking about. Sorry. but you don't.

If you had a child who was totally unable to function and who played with their own shit and who smashed everything in sight, you would never ever suggest that that child should not be helped at an early age.

silverfrog

so far you have not demonstrated that you have any understanding of Auditory Processing Disorder (APD)
And living with APD is about developing coping strategies to work around the various types of APD problems.

you wrote
"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."
Wrong. You know very little about APD from what you have just written.

I founded and help run the UK APD support organisation APDUK, which was created to help the Medical Research Council (MRC) to gain government funding for a 5 year APD research program, back in 2002. The MRC got it funding in 2004.
In the MRC APD pamphlet of 2004 you will see that the pamphlet was published in consultation with APDUK, which at the time was me.

That's great dolfrog and I think most of us here would recognise the effort that it must have taken your to achieve something like that.

I'm afraid however, it doesn't make you the expert in autism, nor APD for that matter. There is a lot to learn on both subjects.

The issue throughout this thread is the issue of early intervention. Early intervention is essential so that you will need LESS coping strategies when your reach 6/7 years old.

dolfrog, don't make assumptions like that.

I now full well what APD is. I have not mentioned it on this thread at all, except to tell you that I am familiar with it, so how you can even begin to think I have demonstrated that I do not know what it is is pure fantasy.

and what you wrote, wrt to not intervening until you fully understand all aspects of a condition is the biggest pile of wank I have ever read - it even tops some of the gems I've had concerning dd1's education (and there are plenty of contenders there, i can tell you)

HecateTheCrone

WE have established that there are different types of autism, and that depending on the type of autism your child may have determines the type of support your child will require.

So you really should be more specific about the type of autism your child may have, so that it is possible to discuss the different types of support each type of autistic child may need.

So the problem here would appear the use of a blanket term of autism which can mean many different things to different people if you are not being specific about the type of autism you are talking about. And how that may relate to others who may have similar disabilities which can sometimes mimic some forms of autism in the early stages

dolfrog, every post you write just shows how little you actually know about the types of intervention, and how they might be used.

'WE have established that there are different types of autism, and that depending on the type of autism your child may have determines the type of support your child will require'

No we haven't! Who's 'WE' anyway?

My ds is refused a dx at every turn. We're fobbed off with 'anxiety issues', 'complex communication difficulties', 'lack of empathy', etc, etc,. All of these (and his sensory processing difficulties) may or may not amount to something but we won't know until he's 7 (in a whole year) because we keep being told the same story about 'maturation of the brain'. What happens meanwhile? He is very very close to exclusion and everyone just seems to have the attitude that until he's 7 and proved otherwise he is just the haughtiest boy in the school and you're lucky we're taking him on!
I really feel for you Becaroooo and have a horrible feeling I'm being primed to be in just your position. Alarmed if people like dolfrog are doing the research.

'So you really should be more specific about the type of autism your child may have, so that it is possible to discuss the different types of support each type of autistic child may'

ROFL - Are you serious?

scarily, Red, it would appear so.

Okay. So this is what we have 'established'.

The cause of autism is unknown. There are likely to be many different causes.

The symptoms are generally identified through observed behaviour.

Intervention needs to be tailored to the individual.

ARE WE AGREED?

TBH Silverfrog, it sounds like the SN industry is behind this nonsense.

yep, as I said earlier - I suspect LA involvement too, sadly.

it is just ludicrous to think that this bollocks is touted about as genuine, and that thee are children (like Becaroos, and Lambskins') caught up in the middle of this - children left to flounder until some mythical maturation point - it all sounds like the complete horseshit I was fed re: too young for SALT/too old for SALT years ago...

lambskin

I am sorry to hear your story. Your poor ds.

Thing is, because my ds1 has no behavioural aspect to his issues - he is very well behaved and sweet natured - I feel this has actually hindered him getting recognition of his issues IYSWIM?

I had a conversation with the acting HT at my sons old school 2 years ago that went something like this;
Me: "My son needs help. He is struggling. I am trying things at home but I think I am making things worse. Please help me help my son. He is being made so unhappy. He thinks he is stupid."
AHT: "We cant get him assessed intil he is 7. If its dyslexia it wont show up til then anyway.
Me: But that means he wont be assessed for another 2 years!! But thats 2 years too late!!!!
AHT: Yes.

sigh........

SuffersFoolsGladly

I usually try to avoid issues regarding autism, which is not an area i really want to get involved with.

However I was discussing the "Age of Maturation" with
Becaroooo in relation to APD and other issues. And more specifically in relation to when medical and education professionals are willing to begin to diagnose a disability like APD or Scotopic Sensitivity Syndrome etc, which are some of the underlying causes of dyslexia. Until the Age of Maturation, some children can grow out of these types of problems, as part of their natural development. But if these problems persist after the age of maturation, then a clinical diagnosis of the deficit / disorder can be made.

And the next thing I see is discussion about Autism which was not my intention, but created by the comments from others.

I am still learning about APD, and I leave the research to the professional researchers, and when they ask for my advice I provide it. The Medical Research Council have spent the last 5 / 6 years researching and developing new universal Sound Frequency based diagnostic tests to replace the old language based battery of tests, while at the same time investigating the neurological cause of APD.
And they have left providing information and support for individuals to APDUK.

ON a personal level I have had APD since birth, as have all of my 3 sons, and so has my partner. We all have different degrees of APD, and different cognitive skills to cope with our APD. So I live with APD on many levels every day. And I also run the APDUK Telephone help line helping adults who have APD understand their APD, and parents who have children who have APD.

Yes bec, but now you can see why directing the anger at yourself is misaligned.

You might have got to this stage later than you would have liked, but that is because the whole system is geared up to make sure that you do.

You're not stupid for getting it wrong. You were fed very carefully constructed lies by people who are very experienced in pychologically manipulating parents AND to some extent schools.

As paranoid as that makes me sound I know from here, thank god, that there are others just like me that feel the same.

This is why self-destruction is misplaced and unhelpful.

RedNoise

You wrote
__
Okay. So this is what we have 'established'.

The cause of autism is unknown. There are likely to be many different causes.

The symptoms are generally identified through observed behaviour.

Intervention needs to be tailored to the individual.

ARE WE AGREED?

Nothing wrong with that.

Following on from that one of the many Causes of the some of the social issues can be Auditory Processing Disorder which is a listening disability, which many LAs will not recognise or admit exists.

The observations regarding autistic type behavior can be observed from as you say about 3 years old.

If you only have APD, or have APD with AN OTHER disability, then the medical professionals will not be able to determine whether it is a developmental delay which can be grown out of, or if the problems are APD. Having said that if there is a family history of APD (the genetic cause of APD), or the child has had Glue Ear then support should be provided as if there was a clinical diagnosis of APD.
(and in some cases of Glue ear there is a lack of immunity regarding that type of ear infection, which again can be genetic, and can happen with Downs Syndrome)

Surely the way forward is to have both sides of the argument clearly explained to parents so that they can make an informed decision about their child's future to avoid the feelings of impotency and guilt that sparked the thread.
No professional has the right to impose their decision as to intervention without explaining their reasoning, and that there are alternative therapies and views.
I was at one point advised to let things stay as they were so that the situation got severe enough to warrant intervention. I found this unconscionable. It is not in my nature to sit and wait with no promise of what might be offered at a later date.
I am glad i intervened, and proud of my DS who has made amazing progress. I'm glad i had the choice by being educated enough to be able to do my own research and form my own opinion. This choice is not available to all - but it should be.

silverfrog
RedNoise

For those who have APD, there should be life time Speech and Language support, (this was not the policy of our local SALT) but this is need because we face different forms of terminology in our lives, and those of us with APD may require Speech and Language support at every new venture we undertake.

So why if I am psrt of the SN or LS who I state that my eldest sons did not get the support they required until they went to college aged 16 / 17, and havfe had to play catch up and learn how to learn, because bot Primary and Sencondary Schooling in the UK failed to understand how they learn, and the teachers were notable to adapt their teaching styles to match my sons learning styles. WE were told that the schools were providing the support, but when we accidently spoke to the actual teachers many of them had never heard about our sons APD let alone knew how to adapt their teaching style.

Luckily we seem to have had more success with our youngest son

"feelings of impotency and guilt"

Yes. Thats it exactly.

I talked to the following people wrt my concerns about ds1;
Midwives
GPs
HVs
Paediatricians
Teachers
HT &
a SENCO

And to what end? To be told that ds1 was fine (he wasnt) and that he would catch up (he hasnt).

ds1 is now undergoing private therapy (retained reflex therapy) and has got a referral to the community paed, but its taken me 2 years to get to this point.

And its not just been HCPs and educational professionals who have dismissed my concerns either; family members made it clear they thought I was worrying over nothing and my dh is still some way off accepting that ds1 is not "normal".

It has been a very long, lonely road to get here and we still hav so far to go....

auntevil

Part of the problem which largely goes ignored are the remedial and education program lobbyist, who promote a single solution for what in most instances is a complex set of issues, which requires multiple solutions depending on each childs needs.

So for instance if you move outside of the UK dyslexia industry, you will find a Longitudinal research program which using the genetic link identified 100 or so families with histories of dyslexia, and monitored their children's progress from birth, while also monitoring a control group. This program has now been running for 13 years. The research has found that in family at risk of dyslexia it is possible to identify potential dyslexics from about 6 months old, and therefore possible to begin to put some form of basic support pre school.

If you were to read the vast body of dyslexia research over the last decade you would see that there are at least three cognitive subtypes of dyslexia, three different types of disability, requiring three different types of support, yet the UK dyslexia industry needs to promote a single cause to sell their remedial program.

If you were t o follow neurological research you would know about the lexical and sublexical systems involved in the task of reading. We need to have teaching programs which develop both cognitive processes. The Lexical part of the brain uses our visual skills so requires a Whole Word type of program to aide development, and the Sublexical part of our brain processes sound and so requires a Phonics program to develop. But we never hear about using both types of program or training teachers to be able to use both types of program, we only currently hear from the phonics lobbyists.

There is a great deal of research out there that the government, schools, and teachers, support providers would prefer you not to know about