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100acrewood

ADOS this Friday for DS

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Only 4 days to go. Worried my son (8) may slip through the net. I have my adi r on the 9th March then apparently a meeting straight after with the consultant for a diagnosis? No visit to school no questionnaires and no OT ED PSYCH or SALT have ever seen him and yet just like a diagnosis? What are everyone's experiences and does this seem right. It was camhs and the school and gp who referred him. Is this enough?

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Sally44   

Are you sure the meeting afterwards is to give a diagnosis? And what kind of Consultant are they.

 

My son was seen by a Speech Therapist, a Clinical Psychologist and a Developmental Paediatrician. We had about 3 appointments/assessments over a period of 18 months. Then we got the diagnosis.

 

You can always phone the department and ask them who your son will be seen by and has he been referred to any other professional for assessment or for them to meet with you both.

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This is true. The appointment after is with the consultant and states feedback on the asd assessment? _ parent only.. and they are a consultant within the neuro developmental team so I guess a psychologist? Is this normal part of the process. Maybe they won't do anymore if they strongly believe from ados and adi r that he isn't ?

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Sally44   

I'm not 100% sure if they would diagnose just from that assessment. ASD is about a triad of impairments, which affect your child to a clinical degree.

 

We were first referred to a speech therapist by my son's primary school. She saw my son and played with him and told us to expect an ASD diagnosis just from his speech and social interaction. But she referred onto the communication clinic - which involved the Clinical Psychologist and Developmental Paediatrician. And a final diagnosis was 18 months later. So we would have appreciated a diagnosis earlier. If a child is more severely autistic from birth, then a diagnosis is often made much earlier.

 

After my son's diagnosis he was referred to an Occupational Therapist. After 3 years we paid for a private assessment and he received a further diagnosis of Sensory Processing Disorder and Dyspraxia.

 

Then we took him for a private assessment and he was diagnosed with around average cognitive ability, but with severe dyslexia and dyscalculia and difficulties with working and short term memory.

 

So there could be other things as well as an ASD.

 

Do you think he is on the spectrum?

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Hi thank you for replying. Camhs have pointed to a strong possibility of asd. And anxiety disorder maybe related to ocd or ptsd and also pretty sure of SPD. He has auditory and visual hallucinating. He is now under camhs and neuro to assess. It's been a long wretched journey for a could of years but he suddenly shot to top of list when he saw camhs. I think they try the waiting list cure for all referrals hoping the majority do not require assessment as time goes on but for my son he has just become so poorly and anxious. It's a positive step tomorrow for sure but definitely so much more to do. .... what things are a seemingly clever 8 yr old likely to expect from tomorrow. He has already had 2 melt downs tonight worrying about it.

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Sally44   

From memory it is some questions and also some play to see how the child responds.

 

I think there is also an interview with parents where again questions are asked and parents can raise concerns.

 

I would not overthink it too much. I remember before our son's assessment I was worried that they would not see what his difficulties were. But they did.

 

It is very important that you don't coach him, or give him information about what he might need to demonstrate. I would simply say that the Doctor will have have a chat with you and with him and that there maybe things for him to play with there.

 

You can also ask at this appointment who else your son would be referred to.

 

He should be seen and assessed by a speech and language therapist because speech and social communication difficulties are part of the spectrum. And difficulties with these areas can impact on learning in school too.

 

If he has any sensory issues, being over or under sensitive, or having problems with modulation of sensory input, then he needs to be seen and assessed by a suitably qualified Occupational therapist. Qualified to diagnose and devise a therapy programme for Sensory processing Disorder.

 

For his Anxiety [and Anxiety is part of being on the spectrum, but some children get an additional diagnosis of Anxiety Disorder, or OCD, or both on top of ASD], he needs to be seen by a Clinical Psychologist [they usually devise programmes], and CAMHS Psychiatrist [who usually prescribe medication - but who may also devise therapy].

 

My son is on medication. But my position has always been that he MUST be seeing a Clinical Psychologist or CAMHS professional to devise a programme to be delivered at home and school AS WELL. Otherwise you are simply medicating a child to sedate them and they are not learning how to cope with and overcome their anxiety or OCD.

 

Let us know how the assessment goes.

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Thank you Sally44. I am still fighting for further referrals. I had his parents evening last Thursday. On his IEP it states further services needed as outreach and ot but no sign of either. It's was quite enlightening. They can now "tell" when he needs time away because his face goes blank. Time Out is 121 time to talk with TA. This is now added in iep. He doesn't go to assembly. He spends time helping teachers at lunch. He has now been given ear defenders and apparently they leave him to chat because they think it's better for him. They described any format of test as petrifying to the point he freezes and although very bright doesn't perform to his ability. He now does not read aloud or at all unless an adult is sat next to him. I said this sounds like the ed psych needs to come in asap but no response. I have been asking gor ed psych for my rldest to as due gor reassessment on dyslecia profile. Again no joy. School still waiting for assessments to be done. Friday I was the taxi driver for his ados. All that was said was he took part in everything and see you on the 9th March. Since Friday ( maybe a coincidence) he has had 3 nose bleeds bad tummy ache and not eaten telling me his tummy feels like it's been spiked and fitfull sleep. He hasn't been at school. However feels better today. I have finally got the camhs appt for tomorrow. They seemed reluctant because again said they should wait till after assessment even though in hospital I was told he will be given a camhs key worker. Well adi r on Mon and camhs tomorrow. 😯

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Oh and you mentioned asking who else I could refer him to at the ados. They didn't speak to me. I was left in waiting room. Very proud he went on his own but proves in my eyes the theory of separation anxiety from me is not true he is just afraid of being anywhere physically alone. Even if another child is with him. He wants adults around in case he hallucinate. He did tell me he told them in the meeting he hears voices and sees things but he said that today was all about enjoying himself

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Oh and you mentioned asking who else I could refer him to at the ados. They didn't speak to me. I was left in waiting room. Very proud he went on his own but proves in my eyes the theory of separation anxiety from me is not true he is just afraid of being anywhere physically alone. Even if another child is with him. He wants adults around in case he hallucinate. He did tell me he told them in the meeting he hears voices and sees things but he said that today was all about enjoying himself

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Sally44   

I would get a copy of the SEN Code of Practice for Education and Health Care Plans.

 

Read through it as providing support is a graduated process. Ie. the school has to provide a certain level of support in terms of hours or delegated funding BEFORE you can ask for an EHCP. So VERY important to start moving through that process as it can take years.

 

So ask the school what level of SEN support he is currently on. I'm not sure if School Action and School Action Plus still exist? If they do you need to push school to follow that process.

 

Has the school referred him to an Educational Psychologist or Speech and Language Therapist? What is his speech and social communication like? Does he 'chat', or just speak to get things. Does he socialise and play with other kids?

 

If the school has said he needs OT input, what is that for and how will they refer him?

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Now that I have has time to digest yesterday's feedback following his neuro assessments I feel I can ask if anyone else has had similar.

 

He apparently didn't score so high on his ados but very high from adi r for autism so was told without doubt he is autistic but possibly atypical. They were more concerned with his anxiety level haĺlucinations and aggression etc quite right too. They had a list of referrals but the first did shock me.

 

1. Residential family unit for all 3 of us ( gulp) for 6 weeks. Very intensive. Has anyone done this before ? Will have to wait for a space. They could further his diagnosis and clarify his autistic status SPD. OCD. anxiety, poss depression, sleep disorder

 

2. Neuro referral query epilepsy because he hallucinate colour changes?

 

3. OT but none in my area.

 

4. Camhs key worker

 

5. Social worker. Someone I had asked for in past but not taken seriously..

 

Quite a lot to take in

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