New and Unsure

[Fragster]

Good Afternoon,

 

I am new to all this and feel very much in limbo and unsure about what is going on for us and our son who is 7.

We spoke to his school and then the school SENCO about our sons quirky behaviour and how some things he seems to just not get. This was Oct 08. Since then we have seen a child development pead who has told us from her meeting with him and the answers we gave to her qs she believes that he has aspergers, like my half brother, she said that she would not diagnose offically herslef until he has had a multi agency meeting. This is scheduled for Feb 8th. DS1 was also referred to a SALT to assess his communication and language skills. In the meantime she advised us to look at the NAS website at help and advise to support DS1 while all this went on.

 

I have been led to believe that a great deal of weight be placed on the outcome of her report, so I am slightly worried what this means for him. The SALT report noted some of the things we answered such as litteral take on sayings and not really understanding jokes. The SALT did a n inference test on DS1 which involved a picture of a burgularly which she said DS1 scored correctly for his age, the only areas that she herself mentioned as an issue were that he is behind on his Linguistic concepts understanding, that he looked at small details before seeing a large picture meaning that his verbal descriptions dont make sense and the fact that he could not stay on task.

 

Do you feel that this latest report doesn't support a diagnosis of an ASD or actually point away from one?

 

Also Leon has issues with body language and understanding concepts such as personal space and appropriate conversation which is not inmproving in fact I believe this is actually getting worse. I thought things such as this would be covered by SALT as well, for non verbal communication etc, but it was never touched on or discussed.

 

Your thoughts and opinions would be very much appreciated.

 

Many Thanks

Steph

[JsMum]

Hi Steph and its nice to meet you on the boards here, firstly it is true that your son has to be seen by a multi agency team to discuss with the reports that have been carried out.

 

All the reports will be very important and much of what you have described is very similair to my own son who has High Functioning Autism which is very similair to AS the only difference is that my son had significant Speech and language impairments but he is very literell too and though he can talk he doesnt comprehend very well and he has a very black and white taking on things.

 

My son also has ADHD and wonder if they are looking into this as he wasnt able to stay on task though AS also has these symptoms too, but AS and ADHD is one of the most common duel diagnosis.

 

So it may be they want to assess further into his development.

 

Have you been given a conners scoring form, looking at spersific behaviours?

 

National Autistic Society are brilliant and will provide you much more information with a pack sent to you in the post of the relivant information you spersifically want.

 

I understand all this very stressful and it is very destressing but you have proffessionals on your side which isnt always easy to get a dx but your peadatrition is on the ball all I can say is do take up the offer of NAS and try and get some information ready for when your son has his MAMs

 

As for school your SENCO could be putting in place some social skills training that looks at social awareness, body awareness and communication support, visual support, circle time ect... for example, its great you also have a supportive SENCO so do talk to her about the peadatritions suspisions that your son may have AS like she suspected.

 

Good Luck for the meeting.

 

JsMumxxx

Edited November 27, 2009 by JsMum

[Fragster]

Thank you for the warm welcome and replying so quickly.

 

We have not had a connors report done. What is one of these?

 

We have completed an SDQ and so did his teachers. The pead appt consisted of asking us a lot of q's about DS1 now and what he was like growing up. She had him do hopping accross the room, copy some basic shapes that she had drawn, she also observed him playing and had a talk with him.

When we originally spoke to the SENCO she was really good, but since then has really taken a back seat and she never sees my son now. She told us she has placed him on the SEN register, but she never appears to do any work with him. Initally I had some confusion over the SALT report and asked if she could ring me to talk to me about it - that was 3 weeks ago and I still haven't heard anything grrrr..... This all started after he self harmed at school because he had lost control and couldn't calm down.

 

So other than the SDQ, SALT, the pead and school reports nothing else has been done with him. I was under the impression that they would be discussing whether or not to give him a formal diagnosis at the MAM but after speaking to my step mum I am not so sure now. She seems to think that we will be faced with more appointments first. The school have been quite good though, his new teacher initally said that she had not really seen any traits in him that made him stand out when he first started her class, but he had a bad day with his making noises to himself and other bits and she said she understood more now. Since that day she has worked quite hard with him, understanding that verbal instructions seem to take a lot longer for him to process and long lists of instructions get lost, so where possible they are writing it down for him now. He has been doing a lot better academically since they have started to understand him a bit better. In fact she now talks about him as if he already had a formal diagnosis

 

When we first started the journey I naively wanted to try and get as much help as possible for him without giving him a "label", but the more this goes on the more I realise that actually it will be having this that gains access to the help for him.

 

ADHD hasnt been discussed with us before, but the more that I have read about this the more I do believe that this could be possible; it is so hard to know what is what - how do you all manage to keep things straight in your mind?

 

I am really scared by the mam and dont know what to ecpect, what happens at these meetings?

 

Thank you ever so much

Steph

[cardiff_mum]

hi steph i have been gping through this process for nearly 2 yrs, but we have only actually gone down the road of diagnosis and a statement of SEN since my son started full time school in september.

firstly, get a app with the senco at your sons school. dont be afraid to be pushy, if theres summin u dont understand or dont know, ask her. secondly, call your LEA and find out about help groups in your area that can help answer a lot of questions, i know for the vale of glamorgan its SNAP.

i have so far had 2 apps with MAM with a third expected anytime before xmas. this isnt a short process. im not gonna lie n tell u after 1 app they wil diagnose, and quite rightly as you need to make sure every aspect of your sons behaviour and his difficulties r considered. if you feel something is overlooked, tell the doc, tell the SENCO in fact tell any that will listen its hard, infact, its a nightmare, but the way of staying on top is understanding, read as much as you can, make sure you know exactly whats happening. remember, jus cos theyre docstors doent mean their always right. u know your son better than any1 else and u have to make sure your heard.

an educational psychologist shud be brought into the school to devise a individual education plan (iep) for your son, this will highlight areas of difficulty and try to set steps at making them manageable (reward charts n such). have you seen the ed psych? if not, again ask your SENCO about this. if your not being listened to by the SENCO contact the head teacher, and if that fails go to the LEA.

above all, dont b afraid, i know thats easier said than done, im terrified every time we have a meeting! i wish u lots n lots of luck

xxx

[Sally44]

The problems you initially posted with sound familar to me.

From a SALT point of view I would ask in writing for confirmation that the SALT has experience and expertise in ASDs and speech disorders. If his language skills are significantly affected then that can rule out Aspergers and so he could get a diagnosis of an autistic spectrum disorder (which is confusing in itself because Aspergers is also an ASD). However those with Aspergers are supposed to have typical language acquisition at least up to age 3.

 

You are right that all the social interaction and communication skills are part of the SALTs remit. Ours also did nothing in this area for 3 years until I twigged onto that and complained. Ask the SALT about the 'Talkability' questionaire. This asks lots of questions that home and school can complete about all kinds of skills such as voice tone, turn taking in conversation, how does the child get someones attention, can they make eye contact or use appropriate body gestures, do they understanding facial expression and can they use them appropriately etc.

 

There is also another ongoing assessment and monitoring programme called SCERTS. We are hoping to start using this sometime next year. Again it involves identifying areas of strength and weakness from a social interaction and emotional regulation point of view.