Here some suggested organisations that offer expert advice on SN.

Experiences with the NHS

(21 Posts)
guyshahar Wed 04-May-16 09:49:56

Hi

I am interested in other parents experiences of what they have got from the NHS.

We decided that there was nothing meaningful we could get from them to help our son, so we decided to go our own way. We saw that engagement with them involved a long strenuous battle to get an assessment, and once the diagnosis was made, nothing more that could make any difference to our lives. It's as if they are resigned to there being nothing to do to help autistic children, which we know from our experience (once we were able to give our energy to finding alternatives) is not the case.

I have written about our own experiences with the NHS on my blog at - transformingautism.co.uk/opt-out-nhs/ - I would love to hear your experiences in the comments (it would also help me as it is a brand new blog and I am trying to get some activity on the various posts. It is about redefining autism, not as a disability, but as a condition of great sensitivity that could bring so much to our world if only we could respect it and bring out the best in autistic children).

Guy

PolterGoose Wed 04-May-16 15:11:00

Sorry, but I'm confused, you say you want to go your own way, redefine autism as not a disability and then you talk about treatments... that's bog standard medical model isn't it?

You can't treat autism.

guyshahar Wed 04-May-16 15:37:02

Hi PolterGoose

I have learnt over the years not to get too hung up on words and I'm more concerned with the message than the words I use to express it. Sometimes words do reveal underlying prejudices and assumptions, but other times they do not.

I understand what you are saying. Autism is not a "problem" to be cured - and I have always been very clear about that. Really "treatment" doesn't have to imply curing something or rectifying something that is wrong. It can mean approaching a person in an optimum way to bring out the best in them. You may not be able to treat autism, but you can treat any person - autistic or not.

The "treatment" I was referring to has made a huge difference to our son's life. It was simply 3 weeks of specialised play therapy, not aimed at any particular behavioural change, but aimed at giving him a sense of security and allowing the best within him to come forth. Before we went to it, his life was exceptionally difficult - he was so easily upset and regularly became unconsolable. Life was so overwhelming for him that he did not engage with the world in any significant way. By the end of the 3 weeks, he was far more balanced, able to regulate himself emotionally and more trusting, and was consequently able to interact more naturally. Over a long period, we continued to use this approach with him at home ourselves, and it has informed our ongoing behaviour and attitude towards him,

He is a much happier and more integrated person now than would have been possible without this. It was the best thing we ever did for him. I have no problem calling it a treatment, because that's what it is and I hope that my true attitude to it comes across more than the connotations that others may place on the words being used.

PolterGoose Wed 04-May-16 16:26:45

Ok, so are you going to tell us what this wonder treatment was or are you just here to promote your blog and book?

guyshahar Wed 04-May-16 16:45:09

Well, it would be great to promote my blog and my book, and I am happy if my posts serve to do that, but it is not my only purpose for writing.

The treatment we found was at a specialist clinic in Israel called the Mifne Centre - mifne-autism.com/

There is a catch, though - they only take children up to 2 years old, which basically rules out most people by the time autism is identified over here. I wrote an earlier post here on why we decided to turn our back on the NHS when our son was very young - and we were totally lost at that time because we didn't have any idea what else to do. We were researching like crazy and came across a passing reference to the success of this clinic in a book by Margot Sunderland ("The Scence of Parenting"). We followed it up and ended up there ourselves.

They restrict it by age because of demand and because they are a small clinic who only deals with one family at a time. They used to take children up to five - but they say that in general (not in every case) the results are clearer with younger children, so they restrict by age to be able to accommodate more people who it is likely to make more difference to.

We actually learnt a lot about good parenting in general from there (we had no idea about it before we went), and most of how we treat our son now that he is 6 is based on what we learnt and absorbed during our time there.

Their site is very useful as it explores clearly the signs of autism in very young children and even pre-autistic signals in babies, so parents who are worried about their very young children and find the site can get a preliminary understanding about whether they may be looking at autism.

PolterGoose Wed 04-May-16 17:15:22

Thank you for linking.

willowthecat Wed 04-May-16 18:18:31

I have downloaded your book thanks

zzzzz Wed 04-May-16 18:31:32

What "meaningful" result were you looking from the NHS?

zzzzz Wed 04-May-16 18:42:12

10 HOURS of treatment a day shock. For a toddler! shock


angry

PolterGoose Wed 04-May-16 18:55:07

I missed the 10 hours angry

Which made me have a deeper look. This is scary.

The less engaged the child the more they're made to stay in the room with the 'therapist'. Really? Let's force vulnerable little children/babies to comply and only then can they escape. That's abusive and dangerous.

And these aren't children with an autism diagnosis, mostly it looks like it's children with a higher risk of autism or who aren't developing typically, and a whole load of attachment bullshit too.

Autism is not caused by attachment difficulties.

I'm actually really concerned that the OP is setting himself up as a autism 'consultant' when his sole qualification seems to be in meditation and having attended a 3 week 'cure autism that isn't really autism' programme.

And, yes, Guy, I am angry. This is insulting to us autistics and it is ethically highly dubious on a whole range of levels.

guyshahar Wed 04-May-16 19:27:28

I am shocked by your response. At the end of the day we are all parents who have been through a significant journey that in most cases we didn't expect to be on. Our family has had a lot of good fortune to find approaches that, whatever people here might think about the concept, have changed our lives.

I decided to use the experience we have had and the lessons we have learnt to put stuff out there that might be helpful to other parents who might be going though what we went through. It is a risky thing to do, as you are always at risk of being shot down by people with fixed ideas who are inherently suspicious of anything different.

I never expected to be writing a book about what has happened with us. I was surprised to find myself sitting with a pen and a sudden urge to write earlier this year. It was the same with the blog. With the consultations, I don't know if this is something that will take off or not. Just being a parent myself I am nervous about starting to do something like this but on the other hand, if someone was to have told me a few years ago what I know now it would have made life a lot easier at that time. I am very open about my level of qualifications. We have seen very many specialists with a lot of qualifications over the years and the qualifications have rarely meant that we received anything valuable. I don't feel that there is anything remotely unethical about aiming to make a living providing meaningful help to people who need it, based on years of hard work and learning through it how significant changes can be brought about. If it doesn't turn out like that then so be it. I have clearly stated on the web page that if anybody is not satisfied with the consultation they will get their money back in full and very easily without complication.

I'm sorry for your anger, but it seems to be based on an unfair suspicion of my motivation .

zzzzz Wed 04-May-16 19:51:09

says the expert with the 6 year old to.......the people who's experiences he says he is interested in hearing from. hmm

what were you looking for from the NHS? Do you believe you didn't get it because of funding or are you using NHS as short hand for mainstream medical practice?

The average 2 year old needs 13 hours sleep.....how on earth can they put in a 10 hour day of therapy?confused. When to they eat, poop, wash, go outside, exercise, hug sadsadsadsadsad

PolterGoose Wed 04-May-16 20:01:03

Parents of newly diagnosed and suspected autistic children are incredibly vulnerable. They don't need inexperienced consultants and therapies, and especially not ones who base their 'therapy' on attachment problems. They need good quality support and the confidence to parent their children and support their development in a way that is kind and respectful.

Are you aware, Guy, that autistic children become autistic adults? Have you met any autistic adults? Would you listen to autistic adults if you did meet any?

zzzzz Wed 04-May-16 20:11:48

Are you aware, Guy, that autistic children become autistic adults? Have you met any autistic adults? Would you listen to autistic adults if you did meet any?

This is what I was thinking.^^^

zzzzz Wed 04-May-16 20:14:33

Would you listen to parents who hadn't done your program?
Those who have older children, less/more able children, children who did different or no therapy?

And just as a thought how would you react to being held in a room and forced to interact?

PolterGoose Wed 04-May-16 20:18:47

Would you listen to my child?

zzzzz's child?

How many autistic children have you met?

PolterGoose Wed 04-May-16 20:20:06

Because if I was paying for your supposed expertise I would want to know what you can offer? What's your experience? Where's the testimonials? Are you even DBS checked?

zen1 Wed 04-May-16 20:34:51

Are there any peer-reviewed evidence-based publications endorsing the approaches at the Mifne Center? Also, why would you need personal/marital/family feedback sessions? How do you know that such young children wouldn't have developed in the same way had they not received the therapy? My child at 2 was non-verbal and unable to walk. He was diagnosed with ASD a year later. Now, at 7 he is completely different, sociable chatty (still autistic), but he's had no interventions other than OT and SLT.

zzzzz Wed 04-May-16 20:52:06

Since its been going since the 80s can you link to any previous clients?

There must be tons of success stories in 39 years of work.

brew? cake? biscuit? Anyone?

guyshahar Wed 04-May-16 21:30:04

I can't link to anybody. It's not my clinic. It's just one of the treatment that we found and I would say the one that had the most impact on our family. Before we went we had the same questions and so we found a family online who had been there and connected with them. Actually although we both felt that the method was right for our family having researched and spoken to the clinic, we were still anxious about what we were letting ourselves in for until we arrived. They were clearly extremely experienced and able to intuitively make relationships with our son and we could observe day by day the difference it made to his experience of life. They taught us through our time there how to sustain this when we returned home, and we continued to see tangible results from this as we went on. About the 10 hours (it was 7 when we were there), there was nothing intense about this and it included play, sleep and relaxed eating. Now they do MRI scans before and after treatment there and they consistently show sharp development during treatment there (I think there are some links on their site about this)

But I did not join this forum to defend the clinic, or to defend myself, from unfounded assumptions, negativity, cynicism and aggression . I had hoped to be able to collaborate and share ideas and experiences in a positive and genuinely supportive manner. It has been made clear that this will not be possible. If anyone is genuinely interested in anything I have said, I would be happy to discuss via message. Otherwise, some of you will be pleased to know, after this post I will no longer be participating in this forum.

zzzzz Wed 04-May-16 21:42:17

i think you came to advertise your blog and look for clients. I haven't seen any evidence that you want to learn anything on this forum. You appear to want to lecture and teach while finding any question as to your ability to do that, qualifications and experience "aggressive".

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