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Anyone got any experience of psychotherapy for an ASD child?

(29 Posts)
pannetone Fri 17-May-13 12:21:50

Because that is what CAMHS are now offering for my 8 year old DD who has just been diagnosed with ASD (HFA for what the term is worth). She already has a diagnosis of selective mutism. I am pretty clueless at how psychotherapy will work as it is very unlikely that DD will speak at all... On the other hand I was not at all keen to do 'family therapy' which was offered last year when older DS got his ASD diagnosis. Managed to turn that into CBT for DS, which obviously wouldn't work for DD.

DD is very anxious and I don't know whether it is a risk that psychotherapy would just increase her anxiety - although I realize that's not 'meant' to happen!

pannetone Mon 20-May-13 20:32:50

Thank you Mareeeya - some familiar stuff there and some to explore. I have got to get up to speed on all these psychology terms - I hadn't thought of the 'sliding in' work that has been done with DD as a behavioural intervention. But that is certainly what I favour as being most likely to produce results - rather than the psychotherapy/psychodynamic(?) stuff.

And i've just re-read that small steps intervention plan for SM by Maggie Johnson and Alison Witgens (I have the manual)that you linked to - and it seems glaringly obvious that it hasn't been followed properly with DD. I don't think DD's 'keyworker' was ever properly 'slid in' - I was never asked into school to do this. And there hasn't been anywhere near the time commitment to several sessions a week which there needed to be at the beginning. The school now seem to complain about the amount of time/SALT intervention invested in DD with little progress but I don't think it's been done properly. Now I feel a bit that my eye has been off the ball... Though with DS3 also being being assessed for ASD and fighting (and winning) a disability discrimination claim against ASD DS2's school life has been a bit hectic...

Off to do CBT 'homework' with DS3 but I am going to print out that Maggie Johnson link, highlight where the programme hasn't been followed, and arrange a meeting at school once the ed psych report is also in. I am not going down the psychotherapy route when the school hasn't followed an established SM behavioural intervention.

MareeeyaDoloures Mon 20-May-13 19:57:34

TBH, I would imagine you are the therapist most likely to succeed with your unique experience of the combination of ASD and SM and of what makes your own dd tick. Like ASD, there are probably subgroups in SM.

Presume you know the principles of behavioural interventions already. Video modelling shows promise too. There doesn't seem to be much evidence for psychotherapy type stuff.

DD also had about 10 sessions of art therapy organised by her school which she liked going to. It probably took her the 10 sessions to get settled. Perhaps school might consider some more mini-sessions, now that they can be adjusted to take account of the ASD?

Phone calls? emails? writing a word down? Speaking at home, then playing it back on Talking Tom during the session? Sorry if teaching granny to suck eggs blush

MareeeyaDoloures Mon 20-May-13 19:52:32

TBH, I would imagine you are the therapist most likely to succeed with your unique experience of the combination of ASD and SM and of what makes your own dd tick. Like ASD, there are probably subgroups in SM.

Presume you know the principles of behavioural interventions already. Video modelling shows promise too. There doesn't seem to be much evidence for psychotherapy type stuff.

pannetone Mon 20-May-13 13:09:52

Thank you for all your posts - and the experiences of psychotherapy.

paperpickle your DS's experience sounds awful for both of you. You say that it is now clear that your DS's anxieties and behaviours stem from his AS and that there is no need to consider any additional factors. This is what I am confused about. If the psychotherapist accepts that DD is how she is because of her ASD and selective mutism, is there a place for psychotherapy? DD does have issues with anxiety and separating from me because of her ASD and SM. My worry is that the therapy will look for other explanations of her behaviour, for example, the relationship between me and DD WITHOUT reference to her ASD, and that they won't take enough account of her ASD in her ability to 'change' and 'move on', or in advising me how to 'parent'.

OTOH I am aware that I might be being hyper-sensitive to any 'criticism' of my parenting and anything that I am doing to 'reinforce' the behaviour. We were repeatedly told that the therapy had been successful for both children with ASD and those with SM. DH is more focussed on that. We agreed at the meeting for DD to be put on the waiting list - nothing will happen before September.

I agree with all those who say that it is the ASD and SM that are 'controlling' DD. As she gets older she is more self- aware and wants to be able to speak because she says that is 'normal'. When she had art therapy she was sad that she didn't manage to speak to the therapist although she wanted to. She didn't know why she couldn't. No control there...

Another huge issue is what Mareeeya says about the point of getting an ASD diagnosis is to put strategies in place to support DD at school. We pushed for a year to get them to assess DD for ASD (the diagnostic service wanted to wait until her selective mutism improved...) and now we have it, the diagnosis should be used to understand why the usual SM strategies don't seem to be working as yet for DD. We are waiting for the ed psych report and I think that we should be putting into place its recommendations before even considering psychotherapy. Your comment zzzzz that the most likely cause of DD's anxiety is 'not having the quite profound needs of HFA met adequately' and I think this hits the nail on the head on what is happening at school, whereas I think that we do pretty well at home - with DS now 18 I have had a fair few years of ASD parenting!

saintlyjimjams Sun 19-May-13 19:47:25

gosh paper that sounds an awful experience.

paperpickle Sun 19-May-13 19:29:08

Have nc as I've mentioned this to a few people, but DS was sent for assessment/psychotherapy at the Tavistock. At the time of our referral he was undiagnosed and I was pretty clueless, I was open to any explanation of his challenging behaviour, but I specifically asked them to consider AS. He was assessed by one of their leading psychs and several clinical psychologists, who told me he showed no signs of AS and that his behaviour stemmed from his childhood experiences (I was a single parent at the time of his birth and they effectively said he was traumatised by the lack of father figure in his life - despite having good male role models in our family). So he went for an extended, intensive period of psychotherapy, which he didn't seem to respond to, and he never seemed to want to go into the therapy room, but apparently signs of resistance were to be expected, as therapy was a healing process hmm

Anyway, to cut a long story short, I got impatient with the complete lack of progress and insight into his needs, went for a private consultation with a private paed, who diagnosed AS on the spot. When I later requested DS's DPA records from the Tavistock, it showed that AS was in fact suggested by the professionals very early in the process. I have no idea why they wanted to conceal that diagnosis from me as a parent confused. But it is very clear now to his school (a specialist school for AS) that his anxieties/behaviour stem from his AS and that there is no need to consider any additional factors.

I know the clinic has a worldwide reputation but it let us down very badly. It doesn't surprise me that other parents of dc on the spectrum have been less than impressed. I also felt extremely uncomfortable on their scrutiny/analysis on me as a parent, and I am confident enough in my parenting now to believe that wasn't just because of my subjective response, but simply because it wasn't valid/provable. I would not recommend psychotherapy for any child on the autism spectrum. At best, I believe it would be ineffective; at worst, quite damaging (to both the child and parent).

DS was 7 at the time of his referral, and high functioning and verbal.

saintlyjimjams Sun 19-May-13 16:24:57

Psychotherapy with young non-verbal kids??? What on earth were they doing. My mind is doing a boggling act at the thought of that.

Charlotte Moore wrote about her experiences with psychotherapy for her eldest son in George and Sam iirc. It's ages since I've read the book but I don't think she was that impressed (think it was the Tavistock Centre as well Davros).

Completely agree about physcial activity. I remember last summer ds1 having an anxiety fuelled meltdown at the beach trying to bash me, and a surfer peeling him off me, chucking him in a wetsuit and taking him out for a half hourish surf. He handed him back, not chilled, but a lot less anxious.

Davros Sun 19-May-13 10:53:49

Odd to suggest such a heavy course of psychotherapy soon after Dx. I would steer well clear, however reasonable they seem, they can't help going back to what has "caused" this behaviour and usually concluding that its YOU! However they dress it up that is what I've seen happen. With an older, verbal but odd child who can engage and who is not anxious it may well have its place but that's just me being liberal, I don't really believe it! I live near the Tavistock Centre (Freud!) and have been to a conference there some years ago about their marvellous "intervention" Wurh uoung, non-verbal kids with ASD. It was so insulting, there were a small number of parents and many other professionals there who rose up tigerher and challenged their claims abd they were stunned! It seems obvious that anxiety is the issue and it is proven that the most effective thing to relieve anxiety is physical activity, especially trampolining. That is a fact, look at work by Emerson on challenging behaviour although you are dow ufically jnterested in anxuety. HTH

NoHaudinMaWheest Sat 18-May-13 13:20:19

Oh and on psychotherapy. I have done it myself as an adult and with my complete consent. It was tough though ultimately useful.
However if I had not been in the right place, liked the therapist and felt that it was my choice to do it, it would have been destructive.
And I don't have an ASD.

I appreciate that the techniques are modified for children but unless it is to deal with the consequences of an obviously traumatic event, I would be doubtful of its usefulness. Clearly that is only my opinion as a 'service user'.

NoHaudinMaWheest Sat 18-May-13 13:15:03

My ds has OCD rather than SM (although actually his reaction to stress or difficult emotions is to shut down completely including not speaking) and ASD.
I putting in my twopenny worth because I have also had the attachment and control things suggested to me.

Control:Well yes OCD does control his environment but not in a way that is actually beneficial to him as a whole; only to the reduction of his anxiety. He is in fact being controlled by his OCD and the anxiety it comes from. Could it not be seen that the anxiety and resutant mutism is controlling the child and ways for the child to get control back would be more useful? That is the approach being taken with Ds now and although it is slow it is much more productive.

Attachment: I stopped worrying about this after something his previous psychiatrist said. She said that it was normal and understandable for children with ASD to be more attached to their mothers because usually the mother was the person who understood them best and could make life more bearable for them.

zzzzz Sat 18-May-13 10:23:46

It might be worth asking Dh if he would mind seeing a therapist about your sex life and see how intrusive/benign he would find that, and whether he'd like to discuss all the ramifications of x y and z over 26 sessions. Many things this sort of therapy is, but a gentle chat to cheer you up, it isn't.

Children with ASD are emotionally immature. I think the perceived wisdom of the moment is that you half their chronological age to estimate emotional she's reception age. How's she doing in that context?

Presumabley you have time to think about it, so there is no real rush. Sleep on it for a few days. I often find with big decisions that it helps to pretend I've decided one way for a day, and then the other, and then see how they felt. One option allows me to be happy and see a path for us all to be us in.

On the controlling thing, it's something that really gets my goat. All the "well being silent is a very powerful thing and gets her what she wants".

No the closest thing to what my dd suffers is similar to stage fright. Standing up and literally being unable to speak when everyone is waiting is not a powerful controlling thing, any more than peeing your pants with nerves is. angry waiting and not helping her when it is obvious she isn't going to be able to talk is NOT helicopter parenting. It's called compassion.

But then they don't have to watch the little person convinced that she will be able to talk on her birthday because "I will be 5", swing off to school.....and then receive the silently miserable little person who says "my words didnt come" and leans against you for an hour instead of playing with all her new toys......yeah she's trying to control you all 'cos it's really really fun to be the one who can't talk.

pannetone Sat 18-May-13 09:41:40

Thanks again for all your responses - not got time at the moment for a considered post but you are all giving me lots to think about. Most telling is that I feel relief that I don't have to agree to psychotherapy for DD...

Oh and zzzzz yes, there was certainly mention of DD 'controlling' things. I accept that but only on the level that selective mutism is a response to managing anxiety. Not at all happy about suggestions DD is trying to control things so as not to have to grow up and 'move on' from her early dependent relationship with me. When DD originally had problems settling at pre school I got enough 'stick' that it was because DD is my youngest after 3 boys, and I was 'not letting go'.At the time DS2 was being assessed for ASD (then at age 14 got his diagnosis) and it seemed a more likely explanation to me that DD was just socially anxious like her brother. And it turns out with her recent diagnosis of ASD that she did have the same difficulties as her brothers... no one has ever suggested they needed psychotherapy!

Other issue is that DH has a far more 'benign' view of psychotherapy - he (of course!) didn't read into it all I did. And the focus seems pretty much on my early relationship with DD and how it is now 'reinforced'... (another shudder)

zzzzz Sat 18-May-13 08:55:11

I don't know you or your dd, and I really don't feel qualified to comment. I have been thinking about you a lot though. My ds1 has a severe language disorder (+?), he presents so like a child with HFA and we may indeed end up with that dx, my youngest dd has severe epilepsy. The medication she takes (which is life preserving) causes anxiety and as a result she has been struggling with SM while she is taking it. We have had periods when she was off her drugs when she has been much more open and chatty. At home she is strident and very verbal.

There is no question in my mind that SM is caused by anxiety and that, that anxiety can be tackled in an entirely non-clinical way. Dd has a hugely supportive school, and over the last two years she has gone from totally silent to, able to answer direct questions from staff members, to chatting to some children in the loos or playground. Last year I worried about her every day. This year I accept she is silent sometimes and it's fine. To be honest it is wearing off.

In your dd's situation the most likely cause of her anxiety is not having the quite profound needs of HFA met adequately. While I can see it would be easier for all concerned if we flip all the issues back towards the child and try and "fix" her, IMO what we need to do is "fix" the environment so that she can function in it.

With all this in mind I would decline the therapy, perhaps with an option to do it if things are not improving later if you feel that would be less "difficult Mother". Concentrate on making her happy in an entirely normal Mummy way. Concentrate on making school as easy as possible.

HONK HONK and please keep posting SM is rather a niche issue on this board and I like the company!

MareeeyaDoloures Sat 18-May-13 03:25:43

The fact she's 'just' diagnosed with hfa rings alarm bells for me wrt starting a long course of psychotherapy. the whole point of bothering with a hfa diagnosis is to allow home and school to modify what they do, and to 'teach' skills and compensation strategies.

sounds like you'll all have your hands full with adjusting to the hfa for the next 6 months, and the therapy could be a harmful distractor. If a 6m trial of putting in hfa strategies doesn't help the SM, you could always consider the therapy then.

And adjusting to a dc diagnosis always causes a bit maternal anxiety, plus often a temporary hiccup in bonding / attachment / relating styles, so my guess is it's best to postpone a decision for 6m, and say you'll let her know.

inappropriatelyemployed Fri 17-May-13 23:32:40

Mmmmm, I would trust your instincts. My son has Aspergers and he has had times at school where he would not speak. Even when more relaxed, he won't speak to adults he doesn't trust.

There is a crossover between AS and selective mutism - does the SM come from the AS? In which case, how is psychotherapy going to help?

My son is currently out of school because school makes his stressed and anxious. SCHOOL makes him like that. This is because even a kindly mainstream school is a hostile, unsafe environment for him. But he can cope outside school and is much more confident and independent. School holds him back because it is the wrong setting for his disability.

This does not make him mentally unwell. I refuse to pathologise his rational discomfort. I feel that is akin to giving unhappy housewives Valium in the 60s!!

Anyway, this may have no bearing on your situation but I thought I would mention it in case!

zzzzz Fri 17-May-13 23:16:44

"I don't feel at all comfortable with this analysing why DD is how she is, and her relationships, particularly with me, and that this will enable her to 'overcome her issues'. "

Why is anyone suggesting her relationship with you (or anyone else) is the cause of her anxiety? This is a really old idea, was there mention of her trying to "control" things too? I am shock.

What sort of "regression" are they envisioning ill occur?

How many people has he/she treated successfully?

Has dd's SM been getting worse or better this year?

pannetone Fri 17-May-13 22:54:56

Hmmm. Didn't enjoy that hour. I felt as though everything I said or did was being analysed - and I'm not sure I agree with the interpretation - eg. DD came over and sidled up to me and psychotherapist said she was seeking reassurance, which I apparently gave by stroking her hair. I said she was after a mint from my handbag, which indeed she promptly helped herself too!

I was mostly ill at ease talking about DD with her in the room - she was allegedly playing and drawing but I know she was listening too! (Her comment afterwards - 'It wasn't interesting, just weird'!) Psych said the therapy had been successful for children with ASD and those with selective mutism - but emphasised no guarantee of course. Apparently shouldn't increase anxiety but DD might 'regress' initially. That was a bit of a 'shudder' word - as were 'attachment' and 'secure bond'.

I am pretty confused - my gut instinct is that I don't feel at all comfortable with this analysing why DD is how she is, and her relationships, particularly with me, and that this will enable her to 'overcome her issues'. There again, it is true that DD is 'stuck' with how she is dealing with anxiety at the moment in not speaking and speech therapy hasn't helped really. (DD also had about 10 sessions of art therapy organised by her school which she liked going to, but she didn't speak to the therapist and there was no noticeable change in her anxiety and selective mutism).

Keepon - I see the point you are making - it is what concerns me too; presumably much of DD's behaviour and personality is driven by her ASD, so I would want this taken into account when thinking about things like attachment. And I wonder if her ASD means that she will be able to respond to psychotherapy - though I've been told ASD DC do respond...

And don't start me on the time commitment because it is probably 26 sessions over a year....

Thank you for all your replies and those honks zzzzz. It has been a pretty whirlwind 3 weeks since DD's ASD diagnosis - had that feedback meeting, met with the ed psych who then assessed DD(waiting for report) and now full-on CAMHS...

MareeeyaDoloures Fri 17-May-13 21:17:09

Good luck. Have to say, my guess would be that art or music based therapy might have more chance of success with selective mutism.

That said, some 'child psychotherapists' are very play-therapy focussed, working with barely-verbal pre-schoolers, and would have skills in helping an anxious dc, without relying much on talking.

zzzzz Fri 17-May-13 15:02:22

You are the Mummy. You do know best.


pannetone Fri 17-May-13 15:00:31

Thanks for all replies. Read your BBC link Polter. In waiting room now.....

AttilaTheMeerkat Fri 17-May-13 14:17:32

Would decline CAMHS's offer. CAMHS certainly have their place but the whole gamut of ASD is not their main field of speciality.

zzzzz Fri 17-May-13 14:17:05

I suppose alo you must undertand what their understanding of SM is and what they feel would be a successful outcome.

I personally don't feel talking therapy is particularly appropriate. I would favour the sort of exercises you would go through to overcome any phobia.

Keepmumshesnotsodumb Fri 17-May-13 14:04:17

Message withdrawn at poster's request.

PolterGoose Fri 17-May-13 13:24:33

Message withdrawn at poster's request.

PolterGoose Fri 17-May-13 13:22:32

Message withdrawn at poster's request.

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