Do I chase a diagnosis or not?

[Plus3]

I am so confused.
DS (9) has been through the system and we are no clearer. He has sensory processing disorder, for which he sees a private OT. School thought he had ADHD, but Dr (ADHD specialist) says definitely not. She said we shouldn't try to label him as he is coping in mainstream, and he would not warrant a statement. Both DH & I think he probably has Asperger's, but agree that he has good coping strategies, so maybe chasing this is pointless?
If we at home are already supporting him, how will getting a formal diagnosis actually help? I do not want to drag him into more appointments, to be told that there may be something, but it's not severe enough to warrant input.
Can we cope with this on our own?

The merit of seeking a diagnosis (be aware the word 'labelling' is a loaded/pejorative term - labelling is for luggage and not for children) is for you to decide as your son's best and only advocate (to steal the lovely Attila's line). If there are issues at school (sounds like there may be if school are thinking ADHD) a diagnosis may or may not help, now or in the future, for your best guess here you need to 1) listen to your gut 2) potentially a crystal ball for anticipating needs further down the line and 3) a very thorough chat with your school's SENCO. It's not an easy decision. One which your lovely ADHD specialist has spent ooh, about 30mins pondering, whereas you are rightly having a good hard thing about it, over weeks/months, possibly years.

Is your DS happy and making good progress at school? Do you foresee problems at secondary school? I believe in taking the long view, so am choosing to stay in the system for now and do everything I can to get my dd2 the diagnosis which I believe is her right (and not a privilege or some sort of fluffy add-on). But that's just me, and dd2. Think of yourself as the Lead Professional here (which, as his Mum, you are!!!!) and ask yourself what it is that you need from the system. Good luck

"DS (9) has been through the system and we are no clearer. He has sensory processing disorder, for which he sees a private OT. School thought he had ADHD, but Dr (ADHD specialist) says definitely not. She said we shouldn't try to label him as he is coping in mainstream, and he would not warrant a statement"

Its not however, down to this person to decide whether he would warrant a statement or not. Telling you that did you and your son a disservice. That person should have known better.

A diagnosis is as I see it a signpost into getting more help. No dx to my mind means that the child is treated at school exactly the same as everyone else and if their additional needs are not being met it can spell disaster for the child.

He may well be coping now but what about secondary school which is not that far off in the great scheme of things?. How would he manage there?. Many children whose needs were not fully met at Juniors can and do fall apart in secondary school. I would not actually rule out applying for a statement in your circumstances and infact would seriously consider making such an application to the LEA.

A diagnosis is as I see it a signpost into getting more help.

I totally agree with Attila.

I went through 4 years of total confusion with my DS because we didn't have a complete dx of all things. When he was in mainstream school, we lurched from one term to the next with no-one (me nor the school) quite understanding the problems he faced on a daily basis. I can only liken it to us all wading around through cotton-wool-stuffed-room trying to find the exit. We could sort-of-see the exit, but then the cotton-wool moved about and the exit vanished. (sorry, very bad analogy but hopefully you understand what I mean!)

In the end, my DS ended up with an anxiety disorder because the wrong measures were put in place to help him purely because we didn't have the entire set of dx to all his problems.

2 years on, and many dx later, I know now exactly how his SEN impacts him because I now have a complete set of dx. So everyone involved with him knows exactly how to help him.

He used to have a "label" of "poor littleTOWIE, we've never had a child like him here before. We don't know what to do" (from his old school). He now has the "label" of "littleTOWIE lovely child. He's great" (from his new school).

We have had several appointments with this Dr - She went into school to observe him. She said she saw a calm, helpful, polite boy, who didn't make odd noises in class. I have a meeting next week with his Head & the SENco to discuss secondary school. He is currently on School Action +

I am losing faith. Either way, I feel like I am failing him.

We have another appointment with her in November, to see how DS has settled into yr5 (he loves the class - he says it is so quiet he can think properly - which means he is probably able to concentrate, therefore no 'issues')

I would very much like a crystal ball.

According the the NHS map of medicine, with regards to ASD

"•needs should be documented in a statement of special educational needs (SEN):

?support to be provided by the SEN Co-ordinator (SENCO) at the child's early learning centre, who is also supported by an area SENCO [11]

•the local education authority should provide for the needs identified in this statement
•the child’s progress can be reviewed through an individual education plan
•approaches that focus on social functioning should be introduced as an on-going intervention strategy from early years to adulthood
•inclusion of children with ASD in mainstream schools [12]:
?some children cope with good support
?some studies have found that social isolation, loneliness, and bullying are commonplace for pupils with ASD who attend mainstream schools"

TOWIE is right that full assessment and diagnosis is absolutely essential. However as the above extract shows, according to the NHS map of medicine (care pathway) an ASD diagnosis should lead to statementing. In contrast, the pathways for conditions such as ADHD only recommend that the child is put on the SEN register.

Not having a diagnosis does not mean that the child cannot be statemented as this is based on need not diagnosis, but nevertheless it is 'game up' if the child is diagnosed and they will be statemented (even if this is after delay).

Wow keep where did you find that info?

I would love to read more

I think he needs a diagnosis for all your peace of mind. I have gone insane and back wondering what's wrong with my child. As it turned his dx was not what I thought and my suspicions was wrong. Knowledge is power and all that

It is ok keep I found it!

sorry for the thread hijack, I got all excited then !!

Thank you everyone.
Poltergoose I think it's just that somehow I am feeling that the professionals are making me feel as if I am chasing something that isn't there, yet they acknowledge that there is??? The word label came from the ADHD dr - she said it wouldn't be helpful to label him as autistic. You hit the nail on the head, maybe there is a bit of me that hopes he will just grow out of it all, and that this is all just a big waste of everyone's time.

I am confused because SPD was acknowledged by the OT as being on the spectrum, the ADHD Dr says & recognises his SPD but then says it's not helpful to label him...agghhh

I really hope that one day our son will be proud of his Aspergers "label". It has given him many strengths and talents, as well as some challenges. And it it Who He Is. :D

"Poltergoose I think it's just that somehow I am feeling that the professionals are making me feel as if I am chasing something that isn't there, yet they acknowledge that there is???"

This is me absolutely. I have a beautifully written report written by an assessor who personally observed my dd2's restricted, repetitive behaviours, awkward, mis-timed, superficial and repetitive social interaction, inconsistent interpretation of non-verbal communication, anxiety, lack of self-awareness, read reports of dd2's severely disordered and delayed language, need for rituals etc yet witheld a diagnosis from her. Which means I am still also this:

"I have gone insane and back wondering what's wrong with my child."

This is it in a nutshell. I would be a more confident advocate for my child if a proper diagnosis was given.