Would you have liked someone to tell you earlier?

[lisad123]

I often wonder how things would have been different if the Nursery nurse had been a little more forceful in her opinion, other than saying to me, "DD1 tends to play alone, doing the same task over and over and is very focused".

However, I am currently running a parenting course for children in the local enrishment group, which provides services mainly for children with SAL delay. One of the parents tells me alot about her child wanting to always be alone, an obbession with trains and cars, lining things up ect.
I know i cant say anything, but wonder if a few hints might be worth consdiering.
We were very lucky with dd2, who got help from 2 years old, and its made a huge impact on her.

Oh bochead sounds like my ds1! So great you have had such support from your family.

I wish my family and partner hadn't labelled me a neurotic, paranoid mentalist for worrying about my DD from as long back as 18 months. She's 3.5 yr now and I just KNEW something wasn't right.

Everyone told me (over and over again) that she just was a bit behind, all kids develop at their own rate, it's because she's the youngest in the family, blah blah blah...
We still don't have a diagnosis for out speech and developmentally delayed child but people seem to have forgotten accusing me of being a stress head who was just looking for non-existent problems.
The last 18 months have been the loneliest and most heartbreaking. I have felt as if I'm going mad at times.
At least now I have the SALT, preschool and paed backing me up that yes, there IS a problem.

And I take no pleasure from that. I would have loved it if everyone else had been right. At least now we're on the road (hopefully) to help and support.

I knew myself from early that there was something, it took a further nearly 8 years for them to finally diagnose it it's so obvious to anyone who has any sort of clue except those that matter it seems, yes i wish i'd been told earlier.

yy to those who who were made to feel neurotic/overprotective/MSBP etc.

I would have appreciated it if we had even been advised that if we had concerns about DS2's development, that we should consider requesting a referral to a pediatrician. That alone would have helped. We just felt like we were beating our heads against a wall as we kept bringing him in to the GPs in the practice (different ones) saying "something is not right!" and kept getting fobbed off. We didn't know where to go from there and felt like we were stuck at a dead end. if we had known to push for paed referral, I'd have demanded it much sooner.

That's not giving a dx, just letting them know that if they have concerns, they have a path to take to check into it further IYSWIM.

My DS is 7 and has ASD. I felt something wasn't right at about 18months and took him to my GP but got fobbed off several times. My health visitor eventually said she was concerned at his lack of communication when he has turned 3 and it suddenly dawned on me that it was ASD. I was hostile towards her and sent her packing but then began the exhausting process of trying to get my DS assessed. It took about 2 years (mainly professionals who weren't interested - 'I don't think its autism - this child is trying to communicate' etc) Anyway he finally got a dx at 5 and has a statement and is coping quite well in main stream school.

I recently discovered that the staff at my ds's preschool knew that he was likely to have ASD when he started there when he was 2 but they didn't tell me - there was I blissfully ignorant whilst they knew of the likely problems ahead. If the health visitor hadn't told me when would the penny have dropped for me? He was my first child and my mum died when he was a baby so my dh and I are like the blind leading the blind. I wish the preschool staff had alerted me earlier, it wouldn't have changed anything really but I hate the thought that they knew when I didn't.

IndigoBell

Denial is about parents not admitting that they share the same problems or issues that their children are experiencing. If parents are prepared to admit that they have similar or related issues then this makes the work of the professionals easier when talking about the genetic issues that can cause most developmental problems.
And yes all children are different, just as all adults are different based on their genetic make up. children do develop are different stages of their lives and at different rates, which make identifying specific disabilities difficult until the age of maturation 6 - 8 years old. If there is a family history of a specific form of difficulty then then these types of issues may be identified earlier.

If a child has communication problems such as speech delay, reading problems, writing problems, spelling problems, etc, then the parents should first look at their own and other family members experiences at that young age to develop a family history of the issues, discover how the family members developed their own coping strategies or not, which ever the case may be, and then the parents can begin to talk to the various professionals about the specific issues admitting their own related issues and how they worked around the problems.

There is no perfect information database of information about how the brain works, and the possible problems we may experience so the professionals do not have the answers we would like or expect them to have, and if they get it ever so slightly wrong they fear any possible legal action for making a judgemental error from irate parents. So fudging the issue can be the only option.

I don't think that is what denial is. I think it is a journey whilst the parent adjusts to the issues. For some it takes longer than others, but very rarely can one embark on that journey whilst it appears that no-one else sees what they see.

One of the FIRST things that parents usually do is look to themselves fir a cause/reason, either a patenting, medical or genetic reason. For some reason this appears to generally take longer for men. My personal opinion on this is that men see it as a reflection of their virility or something.

My DS has moderate to severe ASD according to his dx and yet there is nothing in my or DHs family of an even vaguely similar condition. This is not denial, just the way it is.

StarlightDicKenzie

There may be n diagnostic history as many of these issues have remained undiagnosed or even identified in the past, but these issues do not just happen for an unconnected reason, there is always a genetic link, it is all about identifying the specific family genetic links, which have combined and in some specific combinations cause ASD issues. There is no "just the way it is" that avoids seeking the real explanations.

There are genetic mutations and environmental factors that effect development Dolfrog and whilst genetics can predispose a person to have a disability, it isn't always the case.

StarlightDicKenzie

we will have to agree to disagree.

I'm with Star here,after being part of an official international study into my sister's disability and so doing a helluva lot of research on genetics and neurodisabilities of all kinds for a good 20 years before my own DS came along.

Older fathers are more likely to sire offspring that have one-off, never seen before in that family line genetic mutations. Very young (under 17) Mums are just as likely to have a child with a chromosomal defect as the much commented on older mother. Birth & labour problems cause far more disability than the health establishment ever admits officially.

Nutrition and maternal health play a part - hence why in very large families (Irish Catholic or now more commonly strictly Islamic familes) often have just one child with an issue, as having too many kids too close together depletes the mothers stores and strength. (In parts of Nigeria having children without a gap of 2-3 years is socially taboo, celibacy is practiced by many women to keep it that way!).

Chemicals, environmental toxins play a huge role (DS's Dad's home town is just 70 miles from Chernobyl so that side of the family read everything they can on this topic).

Genetics do play a role - a large one for some disabilities. Look at the Hapsberg dynasty for simple evidence of that. BUT it isn't the whole story, and even where it is other factors such as nutrition/environmental factors can also have a large part to play in the severity of disablity - especially for those that are described as being on one of the various "spectrums" (I include things like bipolar as well as ASD in this).

Neuroscience is still in it's infancy and unfortunately all the vested industry interests and poltics mean we aren't even at the stage where we "know what we don't know" yet as to many causal factors.

Sadly the new diagnostic criteria for ASD - so long awaited look to have been hijacked by various political forces lookng to be able to reduce much needed support rather than clinical considerations. Stuff like this doesn't help in the search for "why did this happen to my family?".

Dolfrog just because you're on the spectrum, doesn't mean the rest of us are.

There is absolutely no evidence that there is always a genetic link

(There is sometimes a genetic link)

Because you have ASD APD you always see things in black and white.

The world isn't actually like that.

IndigoBell

I have Auditory Processing Disorder (APD), but not ASD there is a difference, and I see things in a great many shades of grey, not black or white as you suggest.
Yes APD can be a contributory factor for Autistic Spectrum Disorders, the same as Attention Deficit Hyperactivity Disorders (ADHD), but only when co-morbid with a wide range of other issues, I only have APD.

You obviously have little or no understanding of APD.

There can be some rare instances of environmental factors, but the majority of issues are genetic. If you can identify the specific environmental issue which caused a childs ASD fine, but for most it is a genetic issue.

You obviously have little or no understanding of APD. - absolutely. You're the only person I know who has APD, and I've never met you. So all I know of APD is how you present in your posts.

From your posts you appear to have ASD. You have very black and white thinking. Have absolutely no empathy. Are normally downright rude and insensitive. All traits I associate with people who have ASD. But obviously all I know about you is reading what you've written over the years.

Given that we're not talking to each other, but writing. I don't understand how a listening disability is causing your posts to come across like they do.

for most it is a genetic issue - evidence please....

IndigoBell

"You obviously have little or no understanding of APD. - absolutely. You're the only person I know who has APD, and I've never met you. So all I know of APD is how you present in your posts."

There are multiple APD support groups on Facebook, there is the Adult APD forum the OldAPDs which has over 600 members, and according to the Medical Research Council 10% of the population have some degree of APD. I just happen to be one of the first adults in the UK to be diagnosed as having APD, there are millions more, many only have diagnosis of dyslexia, aprox 60% of dyslexics have some degree of APD as the underlying cause of their dyslexia.

The problem with all forum is they depend on text based communication, or using the man made communication system the visual notation of speech. Those who have APD have a listening disability which includes problems processing speech or any form of notation of speech including text. So due to my APD I have word recall problems both when using speech, and when typing text. I have to avoid expressing emotions on forums because i may not find the correct words, so it is safer to avoid so called empathy diuscussion. I do understand the issues can empathise with most of the situations parents find themselves in, including denial, but i can also see how denial can destroy and individual, and this comes from years of empathising with my DWs issues. (which i can not discuss here).

Those who have APD can be blunt and abrupt processing small talk can be an extra communication issue we can do without. The problem is the form of communication. Any speech based communication (including text) is a problems for me due to my APD, which is the cause of my dyslexia.

"From your posts you appear to have ASD"

This can also apply to you and most of the other contributors on this forum.

"You have very black and white thinking"

I help run a UK support organisation which has to provide the best available information for all who may have Auditory Processing Disorder, so we can not support every quack program that is available. If there was a program which passed the Random Control criteria then we would advise all to use it or them, but so far no program has met that criteria. There are many programs which can provide some support for a few, but the program providers can not identify who the few are, so the programs are purely promoted as a marketing operation.
If what you mean is that I do not agree with your way of thinking then that is not black and white but areas of disagreement, you do seem to have a limited view on things, looking for quick fixes, rather than a long term view.

Are normally downright rude and insensitive. All traits I associate with people who have ASD.
There aere many who are downright rude who do not have ASD. sometimes telling the facts as they are can be a sensitive issue, especially when they trigger a wide range or emotional reactions. I suffer from Post Traumatic Stress (PTS) due to years of disability discrimination in the work place. and in trying to avoid the issues which can cause my PTS I may appear rude, but that is due to the lack of understanding from others of the nature of my communication disability, which happens quite a lot on this forum. So the rudeness could reflect the insensitivity to my disability, and me trying to control my emotions.

"I don't understand how a listening disability is causing your posts to come across like they do."

You need to understand how we communicate and the type of communication we are using. posts use the visual notation of speech, or graphic symbols to represent the sounds of speech. I have problems processing what I hear including speech, I have word recall problems due to my APD, I have sequencing issues due to my APD, and APD is the cause of my dyslexia. So this is not my favorite form of communication, but it is the only way to help others who may have APD, as this is the only mass form of communication.
So may be you should stop discriminating against those who share my disability, and begin to understand the communication problems we may have, or do you have your own empathy issues.

"for most it is a genetic issue - evidence please...."
if you have read any of my posts you will have seen the links to the research papers, research paper collections, research paper sharing groups, something i believe you prefer to ignore, because they show that everything is not as black and white as you would like to believe, but large areas of overlap and grey areas, including the various issues which can cause a wide range of communication issues that are a part of ASD.

Dolfrog, I have no idea what ti say in relation to your misjudged post to Indigo, but assuming it stems from your disability, I think it would be really helpful if you could list say, 10 differences between a person with APD and ASD. Your own account, not a link to various papers with no explanation as to how they answer the question.

StarlightDicKenzie

It is quite simple Auditory Processing Disorders are about various forms of listening disability. And there are clinical diagnostic tests, with regard to ability to process sound based information. And that is the sum total nothing to do with behavior traits like ASD.

APD can be one of the underlying issues which can contribute to the communication issues which can cause ASD, but so can Scotopic Sensitivity Syndrome, Specific Langauge Impiarment, Pragmatic Language Impairment, and Attention Deficit Hyperactivity Disorder.

ASD is one of last remain issue to be diagnosed using behaviour traits, and hopefully that will be a thing of the past when they have untangled the multiple issues which can cause these problems.

APD for most is a single independent issue, similar to ADHD, with no co-morbid issues.
ASD is a complex of multiple issues one of which can be APD, as a contributory causes of the communication problems experienced by those who have ASD

I think I have answered these questions on this and other forums a great many times. I just do not understand why you seem to find APD so difficult to understand. It is about having problems processing what you hear. quite simple really. And from there there are other related communication issues, such as dyslexia. And there are no cures.

StarlightDicKenzie

And to clarify issues Indigo is one of the rudest people I have come across on this list. Insulting my disability, and name calling. I have purposely tried to avoid communicating with her where possible for that reason.

StarlightDicKenzie
And you are correct I use research papers to help explain issues, as they can explain them better than I can due to my communication disabilities, which you also seem to have a problem with understanding.
may be you may have some form of communications issues which prevent you from understanding these issues.