What are the benefits of a diagnosis

[leowoman]

Hi there,

 

I am just looking for peoples personal experience on the benefits of formal diagnosis for ASD. My son, who is 6yrs old, has always displayed behaviours that are common to ASD but so far I have managed him well without any need for outside help. Recently at a school parents evening my sons teacher cautiously mentioned that she thought there could be some social difficulties with my son in school and queried low spectrum Autism (although she did say she isn't really allowed to influence my thoughts on this.!) I explained that I was aware of his behaviours and had considered the possibility myself but as it wasn't causing any problems I was happy there was no need for formal diagnosis. Her reply to me was that I should reconsider this as he may be entitled to funding.! It seemed that rather than the diagnosis she was more concerned about money for the school.! When I explained that I didnt think it was necessary at the moment she questioned my understanding of ASD........aside from being his mum and knowing him better than anyone I am also a qualified LD support worker and have specialised in ASD for the last 2 years so I kinda know what i'm talking about.! lol

Anyway....(rant over) my question is has a formal diagnosis made a difference to your children or is it just a formality for some schools in order to gain funding? I do understand it is necessary (and an absolute battle) for some people to get the help and support they need for their children but I truly believe it is not needed in this instance.

Any opinions are gratefully recieved, Thanks xx

 

[oxgirl]

Hi leowoman,

 

I can only say what my personal thoughts are and that is that I consider it well worth getting a diagnosis, the earlier the better. It's great that your little lad is coping well at the moment, long may it continue to go well for him. All I can say is that if a few years down the line things change for your lad and he isn't coping so well, especially when it comes to secondary school time, you might find it harder to get the help for him that he might need without a dx. I know secondary school seems like a lifetime away now, but it does soon come around. Even if you feel that the school only want to persue a dx so that they can secure funding, it is for your lad's benefit that they get the funding and if they don't have it in place then they might struggle to give your lad the help that he might need a few years down the line, so it would be your lad missing out in the long run.

 

Good luck.

 

~ Mel ~

[Mum of 3]

As far as I'm aware, a dx will not make any difference to a school's funding...it is the Statement of Special Needs that brings funding (if needed), and that can be applied for (if necessary) without the dx.

 

What the dx has meant for us, so far (ony got it last month!), is that the school has access to the specialist ASD service, who are coming to observe DS and advise school and me on how to help him.

 

I went through the same decisions as you, wondering whether, in his case, a dx would relly help DS, but decided to go with it for all the reasons oxgirl has given. I reasoned that I don't know what the future holds for him, and I don't want to be reaching a crisis and then trying to go through dx at that point. If he decides he can cope with life without letting ayone know when he's older, then he doesn't have to tell anyone of his dx.

 

 

[justine1]

Hi there,

 

I am just looking for peoples personal experience on the benefits of formal diagnosis for ASD. My son, who is 6yrs old, has always displayed behaviours that are common to ASD but so far I have managed him well without any need for outside help. Recently at a school parents evening my sons teacher cautiously mentioned that she thought there could be some social difficulties with my son in school and queried low spectrum Autism (although she did say she isn't really allowed to influence my thoughts on this.!) I explained that I was aware of his behaviours and had considered the possibility myself but as it wasn't causing any problems I was happy there was no need for formal diagnosis. Her reply to me was that I should reconsider this as he may be entitled to funding.! It seemed that rather than the diagnosis she was more concerned about money for the school.! When I explained that I didnt think it was necessary at the moment she questioned my understanding of ASD........aside from being his mum and knowing him better than anyone I am also a qualified LD support worker and have specialised in ASD for the last 2 years so I kinda know what i'm talking about.! lol

Anyway....(rant over) my question is has a formal diagnosis made a difference to your children or is it just a formality for some schools in order to gain funding? I do understand it is necessary (and an absolute battle) for some people to get the help and support they need for their children but I truly believe it is not needed in this instance.

Any opinions are gratefully recieved, Thanks xx

Hi there

My son is also six and I also was reluctant about the diagnosis thing because like you I have managed his behaviour just fine except for the usual tantrams etc. I soon realised at school he is a different child and has many social problems,by not getting a diagnosis he will never get the help he needs and who knows what his future will be then.it is like any medical condition no help your condition will deteriorate.I just think given that it can take up to 2 years to get the proper help I do think you should go for it you dont want to wait till he is a teenager because teenagers have issues anyway regardless of asd or not.You dont knowwhen his behaviour will get worse.so do it now.good luck.

justine

 

[Sally44]

Within our LEA things go like this (but please check your own so that you know your local procedures).

 

A child who is struggling in any area (not just education) should be identified by the school and moved onto School Action, then School Action Plus. At School Action Plus stage the school is supposed to get professional advice from the Speech and Language Therapist and the Educational Psychologist. They will give advice to school and SALT may put together a programme to be carried out in school. At this point I need to mention that SALT's remit is also social communication and social use of language (sometimes they need reminding of that!). SCERTS is also a good way of monitoring social skills and a good SALT should know about this. The Ed Psych is more likely to put together advice for classroom strategies or social strategies such as Circle of Friends.

Also at SAP stage the school should complete IEPs (or MEPs) with SMART targets.

The LEA also has an autism outreach teacher who school can contact and who can give some advice. However they usually have many children on their books. In our area over 200 for one woman to cover per annum!!

Some LEAs have delegated funding out to the schools for SEN. Ask your school or LEA how much funding there is per child. At my son's previous school it was 15 hours per week. This wasn't 'individual' support set aside for him. It was 15 hours per week extra input that his teacher/TA had put into his work or teaching him in smaller groups.

I think that all the above 'can' take place without a diagnosis.

 

For some children that might meet most of their needs. But remember that for any child to get a diagnosis in the first place they need 'significant' difficulties which are lifelong.

 

What I found was that my son's previous school did not know what his difficulties were and did not address them. They could not get enough input from the Ed Psych/SALT or AOT to meet his needs. He did not know how to play with other children although he would join in if asked. But would also pace up and down the fence line at breaktimes.

 

The next big push from the above 'level' of support is to get the diagnosis and get a Statement. The Statement, if worded correctly, will secure any additional hours of support your child needs, or increases in staffing levels, or certain therapies or approaches.

 

Sometimes difficulties start to become more prominent as the child grows older. This is because they have a lack of some basic skills and therefore cannot build upon them. So what seems okay at 4, immature at 6 will be totally inappropriate at age 11. Who is going to identify what skills are lacking and who is going to teach those skills to your child?

 

Children with an ASD may struggle in infant school, but may not cope at Junior school level or Secondary school age. To get a place in a SEN school you need a Statement. Even with a diagnosis and Statement you may find that all the SEN school places are full. So you may need to go to Tribunal about that, or indeed at any of the other stages of the SEN statementing process.

 

What do school say is his main areas of difficulty? If he is doing okay academically and is not needing extra support in class and it is the social side, or the social language side, then you could do the following.

You could find a suitably experienced Play Therapist to work with your son over the next 6 months on a fortnightly basis. They should be able to tell you what his social skills are like and what his difficulties are.

 

You could also do the same with a private SALT that has experience of ASDs and speech disorders and you need an independent one that does not work for the LEA or the NHS and have private clients in their spare time. You want a SALT who has experience of Tribunal work so that if you need her to write a report she knows how to do it.

 

The above will cost money. But eventhough you say you can handle him, he isn't with you for a large part of his day. How is he coping in school. Is he happy there. Does he have friends or even know what that means. Is he at risk of being bullied.

 

In my case we got the diagnosis, got private reports and went to tribunal. We secured an enhanced resource place at a mainstream school with a specialism in ASDs. My son has made alot of progress. From walking up and down the fence line he now joins in and plays with other children at breaktimes. He has also joined the school football team and drum club. He has made alot of academic improvements. But we did secure alot of professional input via his Statement. I don't believe he would have made any progress if he had remained at his previous school.

 

But you know your child best. Have you been into school to observe him in class, or have you secretly observed him during breaktimes to see what he does. I would take the teachers observations seriously because they have noticed some difficulties. But it is how you get the help he needs if you don't want to go along the route of a diagnosis. The above suggestions maybe helpful. But again, at some stage, if those professionals are advising you that his difficulties are significant, then you will again have to consider the whole idea of a diagnosis and what that provides and whether his needs are significant or complex enough to warrant a Statement.

[Boy]

I was classed as gifted and didn't have any noticable problems when I was little, but as I got older I started developing more problems, and wish that I had been diagnosed earlier. So, if you think he may be ASD, I think it's well worth getting a diagnosis if possible. Just to be on the safe side.

[Sooze2]

Perhaps the teacher is trying to tell you in a round about way that your son is struggling in class and needs more support than she alone can give him. I think she sounds like a very good and caring teacher, next year he may get an old school dragon style teacher who is not so understanding. You are lucky she is being honest and upfront with you about what she sees, most teachers aren't like that with parents.

 

The DX (which he didn't get until just before he was 9) has brought my son on in leaps and bounds and I was mainly thinking ahead to secondary school where life and other kids are hard. Primary schools are lovely safe nurturing places but I know that there is no way DS would survive in Secondary with out help and his own stratagies to get through it - he is likely to be lead straight into trouble and bad behaviour from the minute he walks through the door so at least he will have a safetly net with the DX and now the Statement.