Diagnosis and then what???

[Karen A]

His diagnosis atm is: possible social communication disorder, dyspraxia, obsessions and routines, blank spells.

His SaLT report has many pointers in it towards semantic pragmatic disorder but cites his speech and language expressive skills and social interaction skills as being delayed and immature. I will wait until I have a firm diagnosis and if his needs are not met as a result of this then I know how to try to get them met because of all the advice that everyone has given me on this thread. <'>

 

Hi.I did not intend to get into extended debates that might not have helped you.

I just wanted you to be aware that if your child has Social Communication Difficulties then a diagnosis of ASD/HFA or AS may be more likely to enable you to access appropriate provision than a diagnosis of semantic pragmatic disorder.Karen.

 

[Karen A]

Don't worry about going off-topic...I am reading all your discussions with great interest!

 

Thanks for that.I thought you might come back and wonder where on earth your thread had gone. <'> Karen.

 

[Karen A]

In an ideal world, and maybe within your LEA what you have posted is true. But you have to respect that mine and many other parents do not have this experience. Mine was similar to the report posted in the NAS link mentioned above.

A diagnosis of an ASD means that the child has to have significant clinical difficulties with both language and social communication to get the diagnosis in the first place. So there should not be any need for any further diagnosis on top. But when professionals are not allowed to assess and name needs and make recommendations, and call 'disorders' 'delays' and discharge children from SALT, and Statutory Assessments are turned down on a diagnosis of an ASD (including autism and aspergers as well), then what are parents supposed to do? They have to prove the level of difficulty in each area. I was supported throughout the process by the NAS educational advisers and the Tribunal Service and IPSEA. If my sons difficulties had been acknowledged his statement would have been okay and his placement would have been agreed. But I was denied access to everything my son needed, including SALT and school placement. I was denied transport. I was denied a TA to support him in class. This was even when the LEAs own professionals broke ranks and said my son needed a dedicated autism unit. The LEA still denied he needed that. Unfortunately things do not happen as they should. And LEAs bank on blanket refusals of Statutory Assessments and Statements in the hope that parents won't have the money or stammina to keep pushing towards Tribunal. Have you read the NAS link I posted? I am really glad your experience was not mine. But mine happened and is not an isolated case.

And as Frogslegs has first posted. She has received a diagnosis and then been left to get on with it. How is that possible if a diagnosis in itself demonstrates complex needs?

 

Sally.I did want to say that I have never said and never would say that you have not had a dreadful experience.

I have been a member on the Forum long enough to know that I am very forunate with regard to my LA.

I know that LAs play all sorts of completely unjust games.

I suspect that if I did a poll on the Forum I would find that of those parents who have children in Specialist provision the majority have been to tribunal.

Certainly in the time that I have been a member here numerous parents have been through tribunal.

I can say with absolute certainty that although I have never been to tribunal I have not had an easy time.

If you read my other post today you will discover that we spent two years in weekly psychotherapy because it was thought for good reason that Ben had attachment disorder.

During that time I was under such stress that I very nearly had a breakdown.I am very fortunate that I have a supportive husband because our marriage could easily not have survived.

After two years of psychotherapy during which I never forgave myself for causing Ben's problems we discovered that Ben had AS after all.At the time we were not expecting a diagnosis.

Although the LA have been excellent we have had ongoing difficulties with school over appropriate provision even with an excellent Statement.

I was a district nurse and currently cannot return to work because of the level of support Ben needs.

I have stayed around on the Forum and spend significant time supporting others because of life experiences that are the stuff of most parents nightmares.

Please do not suggest that my experience has been easy.

I had decided that I would not talk about my history.Having obtained an AS diagnosis I am attempting to move on.

Many of my experiences I will not talk about on the Forum because it would not help others to know.

All I can say is that if I did not have a passionate belief in supporting partents to obtain appropriate provision I would not be here.

I do not believe that a diagnosis in itself demonstrates complex needs.I believe that a thorough assessment conducted by a team of appropriately qualified professionals supported by parental evidence to establish that a child has sufficient SEN to warrent provision via a Statement is what is needed.Karen.

 

 

 

[Karen A]

Hi All.I thought I should clarify for those who are new and do not know me or Ben so well.

Ben is currently in a mainstream primary school in year 6.He has support from ASD outreach and has a Statement. In theory he has full time support in school.

Ben has a place at a mainstream secondary school for next September.Karen.

[wasuup]

Hi.I did not intend to get into extended debates that might not have helped you.

I just wanted you to be aware that if your child has Social Communication Difficulties then a diagnosis of ASD/HFA or AS may be more likely to enable you to access appropriate provision than a diagnosis of semantic pragmatic disorder.Karen.

 

 

All advice is most welcome and thank you for caring so much to do so

[samlove]

hi, ive got a 6yr old girl, the school did a GADS test and found she is high on the asperger's. so i went alone to my docs who refer her to doc to statement her, that i found out was the wrong thing to do at the start. so it was bounced back to my doc who the refer her to a child mental health hos. why cant things be made clear to not only help perents but docs to. in what is the right way to do things.