To believe that Britain promotes eugenics.

[WriterofDreams]

I am aware this is going to be highly controversial and could upset some people but it's an issue that genuinely concerns me and I'm not just shit-stirring. I do expect to get flamed, but any reasonable argument or debate is very welcome.

I come from Ireland where abortion is illegal. I am fully aware that many Irish women go abroad for abortions so I'm not saying look how great we are we don't abort. However, until I moved to the UK I never heard of the practice of people testing their baby for anomalies and then aborting them if there was something wrong. It genuinely shocked me that a couple who tried to have a baby, went through the sometimes stressful process of ttc, got the longed-for bfp and then lived with the expectation of a baby for many weeks could then go and kill that baby because it had Down Syndrome or some other (non-lifethreatening) genetic condition. I have looked it up on a number of sites and extreme though it may appear I can't get past the feeling that this basically hidden eugenics.

What do you think?

saintlydamemrsturnip glad you posted, do agree that people can never see having a disabled child can actually add something good to a family.
and inclusion imo is one of the worse things, I think in many incidents it is totally unpractical for the child and just excludes them more.

In my working time (12 years) I knew of 2 instances where the diagnosis was clearly wrong.

One became apparent because the woman continued with the preg and the baby was impaired but not as seriously affected as first suggested.

One where the chromosomal analysis suggested normal and the baby then had the condition that they were supposed to be testing for. (This was a complex genetic condition)

There were countless other scenarios where the prognosis was 'out' but the parents had been warned that it was impossible to be exact.

The vast number of scenarios where the diagnosis was spot on and clear and the outcome was unequivocal far outnumber the others.

For the mums reading this thread and pondering did I terminate a healthy child I would absolutely have faith in saying you didn't. You made your decision with the information available and it was accurate.

There was never a mission to terminate 'willy nilly' The mission was to provide women who had elected to have screening with a 'worst case scenario' and let them decide.

My concern is that women had not really considered screening in detail and possibly cannot possibly understand the ins and outs and complexity of the screening process. It's enormously complex and thus a black and white answer to is my baby normal? is impossible. Women then are left with ambiguous suggestions and in an emotive state can opt for termination believing all disability is bad.

If their baby is normal but injured at birth (my own personal experience of disability) they dote/love and protect that life for as long as they possibly can. The number of mums coming on here to say how enriched their lives are are testament to that change in perception from 'before birth' to afterwards.

The level of disability will affect the decision and that is something that is personal and has to be experienced to really understand the effect on your family dynamics.

I agee with the views on inclusion. It was sold as a way to improve the lives of children with disabilities but really (as always) it was a cost-cutting measure for the government. When I was a researcher working with children with Down Syndrome I met so many children in mainstream schools who basically sat and played with their LSAs for the whole day because the class they were in (which was the right class for their age) was way way ahead of their ability. Also, other children rarely played or interacted with them because of the difference in language levels.

Of course some children with disabilities (including DS) do excellently in mainstream education. The education offered should represent the best fit for the child given their abilities. Many of the parents I spoke to were sold inclusive education basically as a way to make their children more normal and acceptable which made me feel sick really. The attitude was that special education was distasteful in some way, despite the huge benefits it can have for some children. Many of those children would have had more friends and progressed faster in a special school (a view supported by Sue Buckley of DownsEd international). But, special schools are costly and so it suits the government to sell mainstream education to everyone regardless. If a child makes no progress they don't really care.

your not wrong, I do think a lot of inclusion is more about making others feel better, so people can say , oh but my child has a child with CP in their class...
some children manage well in MS, and that is good, but I never wanted dd yo end up being "poor little dd", she is in an SN school and totally included in everything
to me SN schools are the way forward.

Agree victoria - I used to work in cytogenetics and I have found people don't always really how grey things can be. Even for something like DS (a mosaic result for cvs can be a nightmare for example).

Wrt inclusion I think people sometimes have lost track of what you're trying to achieve. My son now surfs regularly which is fantastic and huge fun for him. He can only do that because special events have been provided. I would never have tried surfing with him (non-verbal, challenging behaviours, limited sense of danger - surfing didn't stand out as an activity for him). If inclusion means 'you are welcome to join in snd we won't refuse you but we expect you to fit in with us' then it would never have worked. It works because we have special events, and 1:1 -ok he's not in the regular group but he's included in an activity he otherwise never would be.

Cross posted with riven. I think some children can be successfully included in mainstream - and in many unsuccessful cases the failure shouldn't have happened. However, there are other children who just cannot be included - not in the way it's thought of - as their needs are so different. Ds1 for example needs locked doors to be free (without lthst he needs someone at his side the entire time ). He also needss different curriculum.

He canbe included in society - preferably from within specialist schemes.

I am shocked at what happened with your DD Riven. To me it reveals the inherent lack of value the medical profession places on disabled children - it seems like they genuinely couldn't see that you could love your DD and want her to survive as much as the parent of any other child would. I wonder would they encourage the parent of a child born at 32 weeks which needed a vent but was otherwise "normal" to turn off life support?

What struck me as odd also when I worked with children with disabilities was the huge difference between how people were treated depending on whether they were born disabled or had become disabled at some point later in life. Disability acquired at birth seemed to be included in the first category, along with Down Syndrome and other genetic disorders. The facilities for people who had once been "normal" and had lived a "normal" life for some time were extremely well funded and state of the art. An example I'm thinking of is the national rehabilitation centre in Dublin which provides physiotherapy, occupational therapy, speech therapy, education and training for people with acquired physical and mental disabilities. These facilities far outstripped any offered to people who were born disabled.

Equally I remember a mother telling me of the terrible fight she had to try to get speech and language therapy for her daughter who had autism. She eventually got one visit a term (not nearly enough to make a difference). Then one day she saw a notice in her GPs office advertising speech and language services and offering one hour a week. She couldn't believe it, it was exactly what she wanted. When she tried to sign up for it she was told that service was only for people with acquired brain injury not for people who were born disabled. So even though her daughter needed it and could benefit from it, she wasn't allowed to do it because she didn't fit the criterion of having once been "normal."

A lot of parents brought this issue up with me. They couldn't understand how the boy who was a paraplegic from a car accident instantly got a free state of the art wheelchair while their child with CP had struggled in a totally unsuitable chair for years for example.

To me it seemed to represent an inherent bias against people born with disabilities, a sense that they were automaticallly limited and any help they got would be of no use. The way they were born would be the way they would stay. We don't believe this about NT children - we know that they grow and learn and change, so why can't we believe this about disabled children?

There's a program by the man who does the see-hear program on radio4 and one of the people he speaks to is a man in a wheelchair who was convinced before his accident that in his present situation he would rather die. He was from a low socio economic group. Almost the instant he broke his back he knew it was a positive thing, he now (as far as I can recall) has a doctorate in social studies or similar and says his accident has been the making of him.

I can totally see why you feel like that Riven. I don't know how I'd feel if I was in your position, but I do believe blinkered attitudes to disability come from a genuine lack of knowledge rather from any real malice. Of course there are a few people who are openly anti-disability, in fact a lecturer I had in teacher training college (a person you would expect to be knowledgeable and understanding) used to refer with disgust to "the autistics." Her feeling was the "the autistics" should be kept away from "normal" children and that they were nothing but a nuisance in the classroom. She was in her late 60s so she came from a different era but that was no excuse at all in my eyes. She was passing on that attitude to future teachers, most of whom thankfully had the sense to ignore her.

Can I just reinforce the message that inclusion doesn't mean "If you can't stand the heat, get out of the kitchen". It means providing appropriate support so that all people can participate, regardless of disability/gender/age/race etc. There have been many misinterpretations & abuses of the concept, but they are being energetically addressed.

I'm gobsmacked by your tales of facilities being provided for accident victims, but denied to those born with the same injury! Surely this is down to idiot box-tickers? What happens when you challenge it?

In my experience Ghoul nothing happens. Services for people who are born disabled or acquire disability from birth are entirely separate from services for people who acquire disability in childhood or adulthood. The latter come under medical treatment while the former come under social care and education, at least in Ireland they do anyway. In a perverse way if you have a child with a disability you're nearly better off disabling them more through injury in order to get more help (not that any parent would ever in a million years do this).

I never realised that you got more help if you had a later disability. that is terrible, and I am lucky that I haven't come across. it.
sadly there are many people who do feel a disabled person or someone with sn is a lesser person, on here and in rl.(I don't want to get into a debate about inclusion/exclusion as I think that is better placed on another thread)

I don't think the intention is to discriminate vindictively against disability from birth. As many a SALT will tell you, the difficulties with Speech and Language that a person with a disability from birth have are completely different in origin and type than those of an acquired brain injury.

In the first, the whole language development has been interrupted, and the difficulties are widespread. SALT is for people who have a short-term 'fixable' problem.

Acquired brain injury means that the individual has already mapped and acquired language skills, then something has happened to block that part from use. SALT can help the brain to 're-route' the information that is there.

It is totally different.

SALT is very scarce, hence the SALTs have to prioritise short-term intervention with the most chance of making a difference.

Moondog is an excellent SALT who posts in the SN topic - she has said herself that direct SALT with a child with, say ASD or language difficulties is pretty much useless. Immmersion with peers to model good language is the thing that will help, with teachers who know SALT techniques.

Ghoul - I agree but sometimes the support that is needed is something that is separate in some way- this is something that inclusion policies struggle with. The problem is when specialist schemes are removed and replaced by 'inclusive' schemes which the most severely disabled can't access. They're then stuck at home with nothing.

To come back to the surfing -a specialist scheme, but we've just been out to the surfing beach for a walk. Ds1 ran into the surf school - there were a few coaches there, they all seem to know him now and were chatting to him by name. That to me is successful inclusion but came about via a specialist scheme and would never have happened without that specialist scheme.

In my experience Lougle the belief that therapies such as SALT won't really help children with disabilities is not supported by evidence. It is more an assumption that therapists make. Of course it is true in certain circumstances but it is not fair in my view to restrict access to therapists on a blanket basis just because a person is disabled without first attempting intensive therapy to see if it will in fact have an effect, which is what usually happens.

I worked in two very different settings for people with disabilities - one for children with autism that used intensive ABA techniques and a more traditional special school for children with a range of moderate to severe disabilities (including autism). In the ABA school the basic philosophy underlying the whole programme was that any child could potentially do anything regardless of their disability. This belief was upheld to such an extent that we were encouraged not to research autism as it would only give us assumptions about the ability of the children being limited in some way. I thought this was a bit extreme but I did see some children come into the school with absolutely no language and after less than a year of the intensive teaching they were speaking almost at the level you would expect for their age. For other children the programme was less successful (as is the case in any school, special or not).

However, in the traditional special school I came up against the "Oh no that won't work" attitude again and again particularly from the SALTs. Having come from the ABA school I was used to tackling problems head on with intensive teaching so I found this attitude really irritating. I suppose the attitude of the ABA school that any child could potentially do anything had sunk it. I remember one child with autism in particular who was trying to communicate but was getting frustrated and aggressive due to his difficulties. The headteacher who knew my background asked me to suggest some techniques to his teacher which I duly did. I was very confident these techniques would work, to me they seemed basic and I had seem them work before with a few different children. But, straight away I had the SALT barrelling in saying "Oh no he has such and such cognitive level he won't be able for that" and she put a stop to it. So he continued to suffer and to be aggressive. My attitude was "why not try it?" but the SALT was so convinced that it wouldn't work she wouldn't even give it a go, she just wanted us to accept that was the way he was and he wouldn't change. It pissed me off big time.

Incidentally when I did my psychology degree I did my third year project on attitudes to learning disabilities. It was a piddly little student project but it still produced interesting results. I had two forms with the same scenario describing a child who attempts a task but then refuses to continue. One said he was disabled, the other didn't but that was the only difference between the two forms. I then had a series of questions about what the respondent would do to help that child. I found that when the child was described as disabled people were significantly less likely to encourage that child to continue (despite the fact that the scenario contained very strong hints that the child was simply refusing to continue rather being unable to do it). In fact most people said they would let the child stop if he was disabled. This contributes to a phenomenon known as "learned helplessness" that is common among disabled people. Others expect that they can't learn and that all gaps in ability are inate rather than due to lack of effort or learning, which leads to the disabled person never really being challenged and learning to always allow others to do things for them. It is a well-meaning but very harmful attitude and I was surprised how common it was among the SALTs and other therapists I met.

Very interesting writer. I research severe autism- a big theme of the research is competence which is totally at odds with the standard psychological theories.

Ds1 was refused salt aged 2 because 'he's' not capable of anything is he?' (quote). Aged 11 he is surrounded (at sld school and respite) by people who describe him as 'smart' and 'bright' and as having 'lots to say'. He's non-verbal but his his respite manager has arranged SALT for him.

This was what I meant earlier about people needing to see these children as worth investing time and energy in. It's why I'm so grateful to the people who have made the surfing possible (a local surf school snd a learning disability charity) as it's rare for people to see kids like ds1 as being worth that time and effort. I know I'm a bit of a stuck record with it but it has been so brilliant to find something that ds1 enjoys and can access relatively easily.

I'm on the ipod now but will try to message you later as I'm really interested in what you are saying (feel free to message me).

I am also a SALT (wasn't expecting to say that on this thread!) and have mixed views on this.

I also come from an ABA background, having been a tutor for five years before/during SALT training. I am very grateful for my ABA experience and I agree re: the importance of having dreams and hopes and ambitions for children with even the most severe of disabilities.

On the other hand, it is not all about expectation, is it? The children I worked with in ABA settings are all leaving adolescence now, and although I have no doubt that ABA was the right choice for them and gave them a range of functional skills (including some that make a tremedous difference to quality of life such as toileting etc), they are most assuredly still autistic and some of the expectations we place on I wonder about the ethics of now.

I don't really want to go into it in too much detail, but we did some very dodgy behavioural things in the name of treating the kids in our care "no differently". An example? A five year old boy had "misbehaved" while transitioning to mainstream school one morning. His consequence was to have no treats/"stimulation" e.g. activities for the entire afternoon. He sat in a corner sobbing his eyes out saying "no crisps?", "no computer?" etc (he could combine two words so was at a toddler level linguistically). I will never, ever forget him looking up absolutely panic stricken and saying "no mummy?" and receiving no response (as the protocol was to "ignore" him as he was "attention seeking").

I don't believe this was treating him "no differently" to any other five year old . I saw great, great things on ABA programmes that shaped my practice as a SALT and still inform my current work.

However, for me, there is a line to be drawn. We need to ensure that the intervention that we give to children with disabilities will allow them to grow up to have respect within and for their communities, access to work and leisure activities that fulfil them and the potential to develop personal relationships and experience as much independence as is possible for them (ideally as much as any other person of their age). However, I don't agree with a "by any means necessary" code with relation to these aspirations.

I know a good many behaviourists would agree wholeheartedly with me, so this is not an anti-ABA post. There are a great many ineffectual professionals who have said hurtful and inaccurate things e.g. that someone is "not capable of anything" ( for saintly's ds1), too, and they can lead people to seek help from sources which can render them vulnerable e.g. unethical alternative practitioners, poorly trained behavioural interventionists with poor ethical codes etc. Poor public services create this situation.

Finally, I too question whether what we say about direct intervention for children with severe language difficulties is true. I wonder how much it has to do with cost leading to therapists believing (and I mean believing as opposed to just towing a party line) that SALT can't work for the most complex of communication disorders. Really, SALTs should be learning how to advise and consult on those communication interventions that have been proven to make a difference but they are so intensive that no public sector setting is going to pay for the training or support the type of intensive practice necessary for efficacious treatment.

Sorry for long post!

arses That has drawn me to tears. That poor, poor boy. That isn't ABA. It is cruelty. I feel strongly about it because a lot of my DD's 'behaviours' are 'attention seeking'.

Today, she bit me as I lifted her. I don't know why, I don't think she does. I put her on the floor straight away. She is nearly 5, she can't get away with biting. She was distraught. Mainly, it has to be said, because her lunch was cooking, (she thought it was 'party food') and in her mind she had come to the conclusion that she wouldn't be able to have 'party food' (lunch). I told her that of course she could still have 'party food', but that she must never, ever bite Mummy.

My Mum revealed that earlier, DD had bitten her hand. My Mum said that she simply didn't react, and DD was biting harder and harder, then let go when it didn't get any reaction at all. I said to DD "Did you bite Nanny, DD?" and she looked at my Mum for the answer, and said in a timid, questioning voice "Did I bite you? Nanny? Did I bite you?" My Mum said "Yes, DD", and she said "I so sorry, Nanny ".

Do you know, I am convinced that she honestly didn't know that she had bitten my Mum. Now, who knows whether she knew at the time, or if she was 'in her zone' and not realising what she was doing, or whether she had simply forgotten. But that was not a child 'attention seeking'. It was a little girl who doesn't yet have impulse control, and can't yet link her actions with consequences.

What is sad, is that for her, everytime she gets that reaction, it is a complete shock to her - she doesn't see it coming. She doesn't realise that if she bites, she will get a negative reaction, and once she gets it, she is so so sorry, but the next time, she will have forgotten all over again .