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Advice needed please!

nuttywench

Just need some advice really.

My youngest son who is 7 has just had a full  OT assessment which shows he covers all aspects of sensory processing disorder and dyspraxia. His speech and language therapist has sent his details off for a diagnosis with an autism panel. They think he fit's somewhere on the spectrum.
My son has a lot of issues, he screams, tantrums, gets aggressive. He has social and communication difficulties and after school alot of this behaviour starts and when we are going out.

The OT which I am paying for because we can't get it on the NHS where we live is making me feel like its all my fault, she said he has learned these behaviours to deal with his issues and that he is manipulating me and she told me i need to grow a pair of balls and give him tough love.

What she doesn't see is me being constant and not giving in and when I tell her the smells, noise etc are still setting his behaviours off she just keeps saying BEHAVIOUR and that I need to give "tough love". 

And when I said after the sessions he is like this too she says the same thing! Even though in her words "we create the monster before it gets better".

I really don't know what to think!

  • I would ignore the Ed Psych, they are just interested in ABC in my experience!

    I've found this link on this website that may be worth a read:

    www.autism.org.uk/.../the-sensory-world-of-autism.aspx

    Your GP can refer you to CAMHS as can a Social Worker if you have one, I would go to your GP and be a total pain in his/her butt until you get some help.

    The school should be putting strategies in place to help your son - his 'behaviour' sounds like sensory overload. Make an appointment to see the school head and the SENCO if the school has one and ask them what they are doing to help your son.

  • Hi Moonraker, Thank you for your post.

    I feel the same and I am looking at alternative things which is hardly anything at all. No Paediatrician available until mid/end of next year!! CAMHS is a no (Ed Psych said not needed yet).

    I have been ignored since he was a baby when I said something wasn't right, and feel so stressed and confused with it all. I feel she is contradicting herself and his assessment report she did.

    He holds his frustrations in at school and does everything he is asked then comes home and lets it all out. He seems to be doing the same there and I get the meltdowns after every session. He screams/screeches, is verbally abusive name calling over and over again, kicks. 

    I think I'm going to need all the luck I can get!

  • Hi there Nuttywench

    I have to agree with the other posters here and it does sound to me like the OT has neither the training or experience of autism.

    My son has sensory processing disorder and his OT has been wonderful. I think you should contact the paediatrician involved with your sons diagnosis/assesment and CAMHS. If there is no specialist OT in your area they may have other professionals they can call on, some CAMHS units have Autism Nurse Practitioners and they can give valuable advice.

    I would hate to think this person is wasting your money and causing your son even more distress. As for saying he's 'manipulating you' and you need to 'use tough love' that is appalling!

    I wish you lots of luck

  • Scorpion0x17 said:

    Hmm...

    I'm no expert, but it sounds very much to me that she doesn't have specialist training in autism.

    If sensory issues are the cause of the behaviour you'll not address the behaviour without addressing the sensory issues.

    Or, at least, that's how it seems to me.

    Agreed. If she knew anything about Autism or sensory issues, she'd know that sensory issues can create behaviour problems.

    Have you spoke to social services? 

  • Thank you Crystal for your reply. I need to weigh up our options and see what to do. As I say this seems to be the only therapy available near us.

  • hi - my son, who's now an adult, recently had an assess't by an OT who specialises in autism.  Whilst we were aware of his issues, we were pleased that she identified the same things and came up with a number of suggestions to help him when he gets stressed.  I'm not at all sure you've got the right OT.  If you haven't you could be spending a lot of money and your family having loads of extra stress for no purpose.  If you feel unsure, then you're probably right.  In the past I've perservered with staff of all descriptions who were qualified in different ways to try and make things work.  Crucially, they were not autism-specific or even trained in depth in autism.  Although there were many good intentions from them, they ultimately were not equipped to provide what my son needed.  We sometimes learn the hard way, unfortunately.

  • Thank you so much Scorpion. I will ask her more. It's taken 5years to get to this point and I don't want to do more harm than good.

  • Maybe you should ask her what training she has in treating children on the Autistic Spectrum.

    (and don't be fobbed off by some ambiguous 'I have X number of years experience...' rubbish - press her on what specific training she has - I suspect this is very much like psychological therapy - if the therapist doesn't understand ASDs and how people on the spectrum behave, and respond, differently, then they can end up doing more harm than good)

  • That's my feeling too! I feel like I'm banging my head against a brick wall.

    Noise is an issue and at his last session he came out got in the car and broke down in tears. My older son was in the session with him and said there was a boy that came in and he was screeching. So I told her he's cried and she said there was no noisy child ... Its BEHAVIOUR because he's realising what used to work to get control isn't working anymore and he's struggling with the emotional elements of this.

    I have no other option for OT as there are no NHS services in my area.

  • Hmm...

    I'm no expert, but it sounds very much to me that she doesn't have specialist training in autism.

    If sensory issues are the cause of the behaviour you'll not address the behaviour without addressing the sensory issues.

    Or, at least, that's how it seems to me.

  • I'm not sure they say they provide specialist assessment and therapy service for children and adolescents with developmental and neurological conditions, using sensory integration and other therapeutic approaches.

    My sons therapist said she can't get to the Sensory issues without me sorting his BEHAVIOUR issues out first. She said because he has been left too long without help for the sensory stuff that he has learned these behaviours.

    She wanted him in for 5hrs yesterday but I couldn't go.

  • Is this OT you're paying for trained in autism?