Follow up letter

[dekra]

After my son's inital assessment back in Aug I was told they would have a review meeting with the multi-disciplinary team the next day including the paed and SALT that assessed him but also the consultant paed and consultant clinical psychologist. They have said from the review he has many features within the traid of impairment as well as GDD and will be continuing observations for a period of time.

 

So I am confused, they said don't think ASD just GDD and communication disorder but now the letter is mentioning all 3 with his problems listed as 1. On going assessemnt of communication disorder including Autism and 2. Generalised Developmental Delay (I'm assuming Generalised and Global are interchangeable terms for same thing).

 

I know it's just a name whatever dx he eventually gets but I'm as confused as heck over their wording. I THINK it seems to mean they are not ruling out ASD and will be continuing to observe him and decide further after more observation and input from HCP's involved in his care.

Edited October 17, 2011 by dekra

[justine1]

Hi

 

I think often when the MDT have met up the outcome may be different to what they originally say on the day, as they can compare notes so even if one person on the MDT suspects ASD on the others do not they will want to consider it IMO.

 

However if you have not been given a follow up appointment or some sort of timescale in the letter I would query this. Often with younger children they want to wait until they have started school or at least for 6 mths to see if anything has changed in their development. I would just make sure they are going to continue assessments and eventually give a dx either way, and not just fob you off.

 

Both my boys have ASD as their dx but they could not say where either of them are on the spectrum though with Sam who got dx'd age 6 he did get "aspergers ? "on his report, whereas Dan who got his dx age 4 did not get anything other than ASD and they said they will continue to observe him to give an accurate dx of where he is on the spectrum.

[Kathryn]

I THINK it seems to mean they are not ruling out ASD and will be continuing to observe him and decide further after more observation and input from HCP's involved in his care.

 

Sounds right to me from what you've said. It may be a good idea to write back and ask them to clarify exactly what they mean and as Justine says, to set out the timetable for future review.

 

K x

[Sally44]

Yes they will spend an amount of time waiting to see if certain skills develop, because there are timeframes when children definately pick up skills. A delayed child will pick them up, but later than other children. A child with an ASD will continue to have those problems for the whole of their life, although they will get better at them as they get older.

 

For example, theory of mind. A child with GDD should develop theory of mind, but probably at an older age. A child with an ASD may have no theory of mind, or may have some theory of mind, but will never completely develop all aspects of theory of mind.

 

And what is important about the two GDD and ASD (because they can also go together with some skills never fully developing due to ASD, whilst others may develop, but later on). But that would usually lead to a dual diagnosis later on of ASD with MLD (to mean mild or moderate learning difficulty).

 

The GDD is a "delay", until they either prove that he acquires the skills at a later date, or it becomes a "disorder" when it becomes clear that it is an ASD.

 

Has the speech therapist noted anything in her report about his language being disordered? Eg. problems with pronouns, echolalia etc. Can he follow verbal instructions. Does he answer questions and stay on topic? Does he "chat", or does he only use language to get his needs met eg. asking for a drink, or the TV putting on etc.

 

From a provision, support, placement point of view - a "delayed" child is more likely to manage mainstream because they are learning in the same way as the other children. If they do not start to acquire skills or catch up, then they may need a special school for MLD.

 

A child with a "disorder" will continue to need provision/therapy throughout their school years [although a continuing need, does not always mean it is provided]. They may not learn in the same way, they may need a different type of placement.

 

Does your child have any sensory issues eg. over or under sensitive to touch, taste, smell, hearing, vision, balance and co-ordination.

 

My child was flagged up by school after 6 months and referred to SALT and EP. The SALT referred him onto the MDT at the childrens' hospital. The Paediatrician saw him twice over a period of 18 months. The Clinical Psychologist saw him once. After 18 months he was diagnosed with ASD, a severe degree of disordered speech and Sensory Processing Disorder. During that time he received a SALT programme in school which was delivered 3 times a week by a TA, and the SALT saw him 3 times. Now he sees the SALT on a weekly basis in school and the TA carries that out in school on a daily basis.

Edited October 18, 2011 by Sally44

[dekra]

Thanks for your replies Justine Kathryn and Sally.

 

The MDT felt he needed further observation

The educational psychologist will be liasing with the new nursery even although it is a private nursery and they usually only work with the council ran ones. The EP will give feedback to the MDT and they are asking the nursery head teacher/manager to prepare a report too (the nursery manager is a primary school teacher so she is well used to these sort of things)

 

He starts 2 afternoon sessions with the Early Years Language Resource on 2nd November and they expect this to increase to the full 4 sessions after he has settled in and they have evaluated him fully. This is likely to be after Christmas. The EYLR has a teacher SALT EP plus SAL assistants and they are all trained for these type of issues. They will be providing feedback to the MDT too.

 

The MDT are meeting later in November to discuss him again hopefully with a fuller picture so they can plan whether to proceed with further specialised observation.

 

Another thing I noted about the letter was the Dr noted that his eye contact with Finn was very fleeting when encouraged. I remember him asking about our observations of this and I have to admit we had never noticed a particular eye contact problem but once we began thinking autism seriously it was something we tried to check for and best we could say was it's not a lot and never for long but it's not absent. I was concerned that we may have been seeing a problem where there was none just because we were expecting it.

 

I do think he has some sensory issues - certain sounds upset him and can make him upset - this varies from outright screaming (almost in terror to listen to it) to hands over ears and a refusal to move. We have managed to overcome on of these issues with the echoy noise of the swimming pool. He loves swimming so much he now only covers his ears but will walk to the pool and once he's in the water it's all forgotten.

 

Does is return to problems in the toiletting department count as sensory issues? He's been having urinary accidents again during the day for the last 6 months after an extended period being dry and has to wear nappy pants at nights again as he is wet every night. Over the last couple of weeks we have had 4 or 5 incidents where he has poo'd himself too, this has been mostly at home but was once at nursery too. I am just so confused over that one I can tell you as I put in a post about it he's not poo'd himself for a long long time - well before he was out of nappies he was going to the toilet for a poo (not asking just going).

 

The SALT has said that his receptive language is working at the 1 or 2 word level and his speech is jargonistic and is mostly unintelligible with the odd clear word. So there is not a lot to work on. He does not use pro-nouns ( still doesn't understand that there are he's and she's so even if he used them he wouldn't know the appropriate one to use), he rarely even uses the term "my" or "mine" although recently he's doing that a bit more. Mostly he talks about himself in the 3rd person. He does repeat back a lot but not always so I am not sure about echolalia and the SALT hasn't raised it specifically. She has said that most of his speech beyond single words are learnt phrases.

 

I am not going to chase the MDT until after the review meeting - I am happy at the moment that they are taking the appropriate action. I will review their review and decide from there if I need to get more pro-active with them.