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I don't think this is a good idea... (CAMHS related)

27 replies

pannetone · 25/09/2012 22:29

I have one DS with a diagnosis of HFA and another DS and DD who are undergoing assessment for ASD - presumably again of the HFA variety. DS1 has had CBT intervention from CAMHS - even they acknowledged it was unsuccessful. DS2 also had a short course of CBT for anxiety issues - also unsuccessful. DD has selective mutism so they haven't tried CBT with her! Appointment for DS2 last week at CAMHS - the usual long and involved family history was taken. Then surprise - enter a family therapist and the proposal that since 3 of my children have anxiety issues, and the lack of success of CBT, we should have family therapy. My gut feeling was 'no way!' The idea was put across by the family therapist that as parents maybe we weren't able to deal effectively with our children's anxiety, as we were unable to challenge them to work through their fears. All seems too simplistic to me and doesn't seem to recognise the complexities of ASD. But I don't know if I am just being prickly about the idea of having my parenting skills examined...

Any wise words on this one fellow Special Needs Mumsnetters?

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zzzzz · 25/09/2012 22:49

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NoHaudinMaWheest · 25/09/2012 22:56

We had family therapy and frankly it was appalling.

We have two Dcs. Ds with HFA and severe OCD and dyslexia and Dd who other than mild dyslexia is fairly certainly NT. The family therapy was supposed to help us manage Ds's OCD rituals better. He had become very severely disabled by them and spent several months in a specialist hospital unit. I reluctantly agreed but insisted that the Dcs were not involved.

The therapist really seemed to have little to contribute to management strategies for DS and allowed the sessions to be dominated by DH's desire to discuss the impact of Ds's difficulties on our relationship although I had made it clear throughout that I did not wish to discuss this in that setting.

Eventually we were persuaded to allow a session including the children but that was a real disaster. Although we had stressed how difficult Ds would find such a set up, it seemed that no attention had been paid to what we said. Both children begged never to have to go again and shortly after that I decide that the sessions were completely undermining and stopped them.

I appreciate that not everyone will have such a negative experience, but I think you are right to be wary. I would at least want to know what experience and knowledge the therapists (they usually work in pairs) have of ASD and anxiety disorders.

BTW I think it is not unusual for standard CBT to be ineffective in children with ASD.

coff33pot · 25/09/2012 22:58

In a nutshell? Sounds like they don't know what to do next. If the children didn't "get" CBT how do they think family therapy might work? Presumably it's going to follow the same ideas as CBT only with encouragement from you for the kids to learn coping mechanisms which I would have thought you would have supported them already :)

I would just go for it even if it were to prove it still won't work at least it shows you have gone with everything requested of you so they can't say you are being awkward :)

mariamma · 25/09/2012 23:16

Oh thank you so much, a family therapist who specialises in complex ASD, why on earth weren't we offered this sooner...

Ah, how disappointing, you meant a regular therapist. Does she know much about ASD? Perhaps we'll give it a miss then...

zzzzz · 25/09/2012 23:20

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garderner · 26/09/2012 10:49

I think this is a good is a good idea. I have two SEN children. My kids react to my moods and my husbands. We must always look at ourselves first, we are the centre of their worlds our worries, even if we don't realise it affect them. This doesn't question your parenting it just gives you an opportunity to function as a team.

zzzzz · 26/09/2012 11:54

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NoHaudinMaWheest · 26/09/2012 12:09

Garderner. I don't necessarily disagree with your post. It was because I was aware that as a family, one person's moods and issues affect everyone else and because I didn't feel that Dh and I were working as a team, that I agreed to family therapy in the first place.

However the therapy is only useful if the therapist is aware of all the factors affecting the family dynamics, in this case ASDs. They also have to be accepting and supportive of the way a family functions and of the parents' love for and nuturing of their children as zzzzz said above. And finally they must have some useful insights or strategies to offer or it is a waste of everyone's time.

OP hasn't said that she feels that there are any issues in her family with regard to parenting or team working. If she feels there are or if she wants to try out anything on offer, I wouldn't recommend that she rule out family therapy. However I do strongly recommend that she checks out the competence of the therapist to help her kind of family. Otherwise it will be at best a waste of time and at worst a throughly distressing experience.

ouryve · 26/09/2012 12:50

From what I've read in various places, CBT has a very poor success rate with people with ASD, since it relies on a degree of self awareness and social imagination which is often lacking and also on the ability to generalise, which also tends to be lacking. Interventions work better carried out in real life situations.

It sounds to me like protocol is being blindly followed for the sake of arse covering.

pannetone · 26/09/2012 14:48

Sorry rushing at the moment having been out all day. Thanks for all your posts which I want to read properly before I reply. But no - I don't feel I need help with parenting my children - and I'm worried this in itself would be taken as a sign that my parenting is lacking! I don't think I'm perfect but 'good enough' especially for my children and their particular quirks.

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Nigel1 · 26/09/2012 16:31

I dont think this is about a lack of parenting skills. It is more a question of given 3 children with HF ASD with the 3 different highly egocentric behaviour that implies I would find it difficult to see how any family can adapt a parenting style that will be so adaptable so as to meet the individual childrens needs - let alone the parents needs. My worry would be that such families are highly likely to implode over time.

Might another way be to seek support from SSD for in home family support to help you manage such a difficult and emotionally tiring group? I have done this in the past for clients. It was a struggle but we got there in the end.

Given the family therapy route how can the therapist be confidant that the language that they are using is actually getting through to the chidlren? Unless they are highly specialist then this is just another hoop to jump through as CAMHs feel that they have to offer something.

For family therapy to be effective all the family have to be able to interact and communicate. In this instance it would have to be on the childrens needs/ abilities/terms. Difficult to see how this is going to work.

coff33pot · 26/09/2012 16:59

IMO I think 99% of parents look at themselves first anyway and how improvements may be made if needed. Most blame themselves for their DCs issues first and foremost as in what are they doing wrong. I know by the time I was sat in camhs office I had tried as many different ways as poss. If CBT failed on each child individually I cannot see how. Collective family therapy is going to benefit. Maybe with one DC to intensively concentrate on but not 3 very different children.

TheLightPassenger · 26/09/2012 17:02

Agree with everyone else, particularly maria's point about whether CAMHS therapists have sufficient experience of ASD, and nigel's point about how far the family therapy process could balance the needs of 3 children with SN that are bound to manifest themselves in different ways.

Ineedalife · 26/09/2012 17:16

My Dd1 and I worked with a family therapist about 15 years ago, I hope they have improved since then!!

She completely blamed my parenting style for Dd1's difficulties and insisted that a sticker chart was the way to go.

Stupid woman definitely contributed to Dd1 never getting a dx despite the fact that I strongly believed then and still do now that she has HFA/Aspergers the same as Dd3.

If I were you I would check that this person has had proper training and experience in managing children with ASD because they are a whole different ball game to other children.

If they are not trained and experienced I wouldnt even give them the time of day as it will only annoy and frustrate you to have your parenting examined by someone who knows jack shit about autism.

sorry if all this has been said , I havent read all the postsSmile

pannetone · 26/09/2012 18:27

Hmmm - letter in the post this morning as threatened promised asking me and DH to a meeting with the doctor and family therapist (who's a clinical psychologist) Unlikely DH can go - he'll find it hard enough to get to the meeting with the developmental paed for ASD assessment the day before... Thinking about it I suppose we've only continued to have CAMHS involment for each child in succession as the failure of CBT showed it was too complex to 'fix' and led to assessment for ASD. I will go to the appointment and ask them how they think family therapy will work, when CBT hasn't.

Nigel (and other posters) are right that I can't see how family therapy could meet the needs of 3 very different individuals - even if the anxiety issue is common it manifests itself in such different ways. DS2 is sitting writing a 'speech' he will give at school on Friday, DD can't answer the register! And we certainly can't interact and communicate as a family in the context of a group therapy session. They have social and communication difficulties after all!

Thanks to those who have shared their own experiences of family therapy - I rather thought that there would be the sort of memories that stick for the wrong reasons!

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NoHaudinMaWheest · 26/09/2012 20:55

Nigel is right that it would be difficult if not impossible for family therapy to work properly when one member has communication and social difficulties. That is why I insisted that the children were not involved initially (and only 1 of ours has ASD). When the therapists did meet with the children, it was clear that they had no idea how to communicate with Ds and had ignored the fairly basic advice we had given them into the bargain. TBH they weren't very good at communicating with NT and emotionally quite mature Dd either.

Ironically, just after I posted last time I got a phone call from CAMHS saying they were reviewing the family therapy service and would I like to provide feedback. I have arranged to do that in a phone call next week and will not be holding back!

achillea · 26/09/2012 21:02

Do they see family therapy as an alternative to therapy for your children or as an addition? I think it makes perfect sense to treat the family as a whole because you all live with each other. It doesn't mean that they will give you all the same program to follow or expect you all to be the same and have the same reaction.

These are professionals and know what they are talking about, I would jump at the chance for such an opportunity but in my cash-strapped borough there's a 3 year waiting list.

I think you should take this for what it is - an opportunity to help your children through their disabiltiies.

pannetone · 26/09/2012 22:40

But achillea actually we function pretty well as a family IMHO - it's my children's encounters with the outside world that present them with difficulties. And I think that is because either people don't have an understanding of their difficulties, or the will or resources to support them.

I suppose I fundamentally disagree with your statement that my children can be 'helped through their disabilities'.Their autistic spectrum disorders are part of them for better and for the worse. And it seems to be at home that we get the majority of the 'better' - where they are best understood and accommodated and the majority of the 'worse' is outside the home where they face the challenges of not being NT in a NT dominated society.

I don't think this sort of therapy (family and CBT) works for ASD because they are unable to engage with it in a NT way. As ASD is a neurological and developmental condition their ability to change their behaviour seems to be limited. Ideally, I would like my children to be given strategies to help them survive and thrive in a NT world but I am not convinced they are able to learn and use such skills, or that it is reasonable to expect them to try to do so.

And I don't agree with your statement that professionals always know what they are doing. Over the years I have met professionals (at CAMHS in particular) who understood ASD and those who didn't. They were all well-intentioned but that's not enough!

I'm sorry that there is such a wait for family therapy in your area.

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pannetone · 26/09/2012 22:44

Sorry achillea - didn't answer your question. Family therapy is being offered as an 'alternative' to individual therapy for DS2 and DD who have both recently had 'initial' assessments with CAMHS. Having said that it might not be an alternative - it might be family therapy or nothing!

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mariamma · 27/09/2012 00:33

Talking therapies have inherent limitations for asd families. So if tried, they need to be expert and excellent.

Sometimes music therapy is more accessible, and asking for it might be useful ie 'shows willingness to engage' even if not available Wink

achillea · 27/09/2012 00:56

Thanks for explaining that pannetone, the services do tend to be a bit random in terms of quality and I can see that it is something that might not be the right thing, on the other hand it might be worth a try. It might be useful if only to give the therapists more perspective on the family dynamics.

justaboutiswarm · 27/09/2012 05:42

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Nigel1 · 30/09/2012 20:00

If you turn down the Family Therapy you will be a marked family as not being willing to co-operate.

I would suggest asking their experience in working with 3 ASD children in the same family and how many times that have proved successful. What are they measuring as success. Since family therapy involves learning to give and take and you have 3 ASD children who due to the diagnosis are highly egocentric I struggle to understand how that approach is going to work.
Then smile and look concerned and questioning.
Then make like a broken record until someone gives you a straight answer.
They cant do it.
FT is the best they can offer.

CelstialNavigation · 30/09/2012 20:43

I would ask them how they plan to create a safe environment for three children with ASD in the family therapy sessions.

I am not saying it would not be possible to do that, but I would push for a detailed answer.

Their answer to that should tell you whether they actually know what they are doing, and have a plan for how to proceed, accommodating 3 children on the spectrum. You will obviously know if their plan is one that is likely to work for your children. Or whether they do not actually know how to do this, and are more planning to treat this as "a family with 3 anxious children."

It could be useful but they should not be proceeding without a very clear plan of how to make this a safe environment for these children, in their particular circumstances.

If they have no ASD-specific plan, I would ask not to have the family therapy assessment until they ahev one, or else reschedule to attend just as a couple when you are both free and ask for input on behavioural strategies to manage anxiety "in case there is anything we are missing."

pannetone · 30/09/2012 22:29

My overall feeling is that I've/we've got enough on our plates without having to 'fit in' with the only option for therapy CAMHS can come up with. I'm not willing to try out something that has got some sort of proven record in dealing with ASD - or more accurately, several complex variants of ASD, in a family. I am dealing with uni applications for oldest DS with ASD, secondary school applications for younger DS with possible ASD, and speech and language interventions for DD with selective mutism. Oh, and we have a disability discrimination claim against older DS's school. Family therapy isn't going to deal with those!

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