Informed Consent?

Imagine one day that you get a phone call.  It’s from your son; you can barely make out what he is saying because he is so distressed.  He tells you that some people have taken him away from his Mum.  You ask him, where he is? He doesn’t know.  He runs out of credit, it’s an international call, and his phone goes dead.  With a feeling of panic and the taste sick in the back of your throat you realize that you don’t know your own son’s mobile number!

Sounds like a parent’s worst nightmare? 

That happened to me! 

What if I tell you that my son was taken into care at the request of his mother, that we are separated and I live in a different country?  Apparently if the primary care giver, in this case his mother, decides to put a child in care it is neither necessary nor required to inform the father.  Does that make it OK?

I studied Sociology at University, several members of my family and several of my friends work in the caring professions.  I would say that I have, for most of my life, been on the side of Social Workers and felt that they are in difficult situation dammed if they intervene when it is not necessary and dammed if they fail to intervene.  I still think that on the whole, but this one encounter that I have had on the receiving end of Social Workers plunged me into a Kafkaesque experience that has without doubt been the most traumatic experience of my life.  More traumatic than the death of my mother, at an early age, more traumatic than when my first wife left me, taking my 2 year old son with her  to go and live with another man in a different country!  

I feel quite emotional writing this. I haven’t talked to many people about the experience, now I am writing about it on the internet, go figure!

It was traumatic for me I can’t believe how traumatic it must have been for my son?  I will go to my grave feeling guilty that I didn’t do more to help my son when he really needed my help! My son has Autistic Spectrum Disorder – small changes in routine and new environments are incredibly stressful for him.  I can’t emphasise this enough, they are very, very, very stressful for him!   I can’t begin to imagine how traumatic this experience was for him!

As I say my son is on the functional end of the Autistic Spectrum he has many qualities, he is normally sweet natured (more so than most kids I would say) but he finds social interaction difficult in a way that we really can’t conceive.  It is common for kids with Autistic Spectrum Disorder to find puberty difficult.  Who didn’t find puberty difficult?  At about the age of 14 he started to take his frustrations out on his Mum he’s a big lad, even at 14 he was bigger and stronger than his mum.  She was finding it difficult to cope.  We looked into having him come to stay with us but the local school said that they could not deal with special needs and I felt it would be a lot for my wife to take on and the burden would have fallen on her as I would have been at work all day.  I knew that there was a meeting that day I thought that it was to discuss my sons “educational needs”.  The upshot of that meeting was that it was decided that my son should be taken into voluntary care “for the safety of himself and his mother”! 

 I was surprised by people’s reactions, friends and family members who’s opinions I respect suggested that this might be a good thing!  Let the professionals deal with the “problem”.  The first place that my son was placed in was a lovely place, I went to visit him there, not far from his Mum and he was allowed to take his dog!  My son loves animals. I have nothing but admiration for the staff that I met. I felt reassured. Whilst he was there however there was an incident where a much younger kid was taunting him and feeding his dog plastic, finally my son snapped and picked up the kid and shook him.  This incident happened in the presence of a care assistant.  The police were called and my son was charged with assault.  The police made a referral to the children’s reporter.  Nothing even remotely like this ever happened whilst my son was in the care of his mother!

My son was then placed in a home for kids with behavioural  problems.  The day he was placed I received a phone call from my ex-wife, she was more upset than I have ever known her, she said it was a horrible place, locks on the doors, they practice something called “pin down”, where a child displaying, undesirable behavior, can be physically held down, by one or more people, until the undesirable behavior stops!  This may or may not be an appropriate placement for kids with behavioural problems but it is not an appropriate placement for an autistic child!

I phoned Social Services – I had a conversation with the manager who took an aggressively confrontational tone, from the start, she only talked about my son’s behavior, never once referring to his needs.  I got the impression that she felt that I was refusing to accept what a threat my son was to society she ended by saying “sorry to be harsh”! I asked why she would feel the need to be “harsh”  when I just phoned up to get information about my son’s case?  She didn’t really answer that.  One thing she did say that gave me pause for thought  – She explained that whilst my son was currently in voluntary care if we were to take him out of care they could apply for a compulsory care order, in other words we would  loose our right to have a say in what happens  to our own son! “You don’t want to go down that road” she said. She was right no I didn’t!

Whilst my son was in this place my ex-wife after a journey of 5 hours and the expense of bed and breakfast accommodation for a weekend visit was not allowed unaccompanied contact with him,  when I phoned him  the phone calls were monitored – when my son would ask me to get him out, which he usually did, I would hear the care assistant telling my son not to try and “manipulate” me. “I’m not trying to manipulate” my son would say.  Again this infringement on the rights of an individual’s privacy  might be justified in the case of a child that is a danger to society but an autistic child?  When my ex-wife went to visit him she found that he hadn’t been washing his hair, he had run out of toothpaste and it hadn’t occurred to him to ask for more.  In my conversations with the staff I was impressed by them, I am sure that for most of the kids, kids that have been excluded from mainstream schools because of their behavioural problems, they are good at what they do.

I am middle class and educated I know how to find out what my rights are and demand them.  I fired of letters and e-mails with bulleted points!  When a second referral was made to the Children’s reporter claiming that my son was “beyond his mother’s control” (a first step towards a compulsory care order).

 “A referral of a child or children to the Reporter should suggest that there is a need to intervene on a compulsory basis.”

I obtained a copy of the report under the freedom of information act that showed that I had been misled as to it’s nature and intent.  I contacted the Children Right’s Officer for the region, a person that I have tremendous respect for, a person who took the trouble to visit my son, play football with him, and talk to him! Having talked to my son and listening to what he had to say, rather than taking my word for it, he decided to act as advocate for us and advised my ex-wife to take my son out of care there and then.  Despite the threats no compulsory care order followed. Phew!

How many other people have taken the word of the “professionals”? How many other parents have not realized that they can, or known how to question the word of the “professionals”?   How many other children have been placed in “care” that is totally inappropriate?

How can something like this happen?  Of course placing my son in a residential school, one that in my opinion did not meet his needs at all, is incredibly expensive to the tax payer these people charge several thousand pounds a week!  The answer is, in my opinion, that whilst there is no funding available to support a Mother looking after a child in the home there is funding available to provide “care” for a child, if that child is labeled as a danger to society? I may sound totally bonkers saying this, but I seriously believe that a well intentioned, but totally inappropriate, conspiracy took place to label my son as a danger to society so that funding could be found to give him the care that he needed!

I was reminded of my own experience when I read about the case of Ben Haslam – Ben’s parents were told that it was too expensive for their son to continue in the school where he was thriving, and offered them an alternative that involved their son be taken into “care” against their wishes!  They have become involved in a legal battle that has cost them at least £60,000!

My case and that of Ben’s parents show how the rights of parents can be trampled upon but what about the rights of the child?

Michelle Dawson an autistic woman wrote an interesting article – The Misbehaviour of Behaviourists this is a critique of Applied Behaviour Analysis (ABA) an autism treatment that has become very popular with parents because it undeniably gets the results that parents want.  ABA aims as you would expect by it’s name to modify behaviour for example spinning or flapping arms is seen as negative behaviour and is replaced with what is seen as positive behaviour – you know not spinning and not flapping your arms!  Of course the easiest way to enforce “normal” behaviour is to hit a child and that is what they did in the early days of ABA after some law suits this practice has stopped but Dawson raises interesting questions about the ethics of imposing “normality” on children even without the use of violence. 

When it comes to the rights of the autistic child as opposed to the parent the important term is “informed consent”.  Autistic children are not generally deemed capable of giving informed consent. As the parent of a child on the autistic spectrum I can empaphise with  Kathy Mannion who as the mother of autistic children  testified against legislation that sought to protect individuals who cannot consent to treatment – on the grounds that this legislation may impede important research on mental disorder! .  The point being made though is that sometimes good ethics must sometimes be sacrificed in the interests of good science?

Perhaps? 

Let us Consider though an earlier attempt to replace undesirable behaviour  with “normal” behaviour a project involving the same behaviourist – Dr Lovaas who went on to become the “father” of ABA.  This project was known as  the feminine boy project the aim of this intervention was that the  undesirable “feminine” behaviour of male children be replaced with more “normal” male behaviour obviously the point was “treatment of pre-homosexuality” !   Let us suppose that the children subjected to the feminine boy project did so given the “informed consent” of their parents and that it was not treatment that they themselves sought out?  Hmmm?

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This entry was posted in ABA, Applied Behaviour Analysis, Autism, Ethics and tagged , , , . Bookmark the permalink.

2 Responses to Informed Consent?

  1. Blanche says:

    A good one. It must have been very difficult for you to write this. As usual very balanced and thought provoking aswell.

  2. Pingback: Mental Disorders 101

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