Diagnosis at last!!

[lucyemma]

Hi everyone,

 

At long last we have managed to get a diagnosis for ds. Our GP made a referral to a psychiatrist who today spent over 2 hours with him and said he clearly has Aspergers, Semantic Pragmatic Disorder and Dyspraxia. We were pretty sure he had Aspergers after reading up about it but really weren't expecting the other two. In one way it feels such a relief but on the other hand we feel mortified.

 

Now he has a diagnosis can anyone advise me whether or not the school/Local Authority will be obliged to provide any sort of help for him?

 

Thanks

 

Lucy

[Sally44]

How old is your child?

What level of the SEN process is he at presently eg. SA or SA+ or nothing?

[justine1]

Hi

Its great news to have a dx <'> I know how you feel my Sam got his dx just before christmas.The paed who gave my son a dx gave me info on what will happen at school,but she also phoned the school directly and has sent them a letter stating in order for my son to achieve at school he needs extra support.So the ed phsych will asses his needs next week and an autism teacher will also come in March to advise the school on how to manage his behaviour.

Speak to the school Senco,mayb they can then contact th physcologist who gave your child a dx.

Edited January 14, 2010 by justine1

[julie1]

they are the same dx that my son was given at age 5. he is 14 now. The support he needs will depend on how bad he is. For my son he needed a lot of support but i did not understand the system. I dont want to sound negative but my advice would be stay on top of everything always ask for anything said in writting. And most importantly be ready for a fight to get your son the education he will need. He will need speach and language support and the level of support will depend on where you live, but dont let that put you off. If you need to ask for a statoury assessement. you will most likely be turned down i think its a standard chuck out letter given to most people, just fill in the part to say you will go to tribunal they usually give in but not always so get as much evidence as you can to back you up. I wished i knew then back when my son was 5 what i no now then he might have done so much better at school. ANY way if i can help further i will good luck to you both.

[lucyemma]

Thank you all for your advice. ds is 6 and in year 2 and is currently on SA. I mentioned to his teacher on Friday about his diagnosis and got the reply of "of right" before she walked off to talk to another parent. Just guess I'll have to wait until the report comes through and start waving it under their noses.

 

The psychiatrist said she would write a letter to try and speed up the SALT process as ds will need to see someone who specialises in semantic pragmatic disorder. I suppose thats some progress.

 

Lucy

[Sally44]

Hi everyone,

 

At long last we have managed to get a diagnosis for ds. Our GP made a referral to a psychiatrist who today spent over 2 hours with him and said he clearly has Aspergers, Semantic Pragmatic Disorder and Dyspraxia. We were pretty sure he had Aspergers after reading up about it but really weren't expecting the other two. In one way it feels such a relief but on the other hand we feel mortified.

 

Now he has a diagnosis can anyone advise me whether or not the school/Local Authority will be obliged to provide any sort of help for him?

 

Thanks

 

Lucy

 

It should help your child get some support. But it isn't guaranteed, and it isn't guaranteed he will get what he needs.

The only legally enforceable document is a Statement. That is why so many parents try to get one for their child. Everything that is specified in the Statement is enforceable by law.

 

Difficulties have been highlighted, which gives you information to work on.

What you need to do is to learn about the SEN process. Your child is on SA. In light of his various diagnosis I suggest it would be worth asking school to move him onto School Action Plus because at this level outside professionals have to observe and assess him in school. Also IEPs (individual education plans) have to be made with targets set in the areas of difficulty.

 

Your local Parent Partnership can help you through this time, and can come to any school meetings eg. regarding IEPs. It is very important that these are done correctly as they are part of the evidence you present if you are asking for a Statement.

 

Your child has been diagnosed with SPSD and a SALT will be coming in to see him. They should give advice to school on how his needs should be met both in the classroom and playground. He will need a social use of language group to go to and the SALT should give advice about that. Ideally the SALT should see him as often as he needs. Their assessments should recommend what input the SALT gives. Usually they try not to be involved ie. give the therapy details to a teaching assistant for them to carry it out. But it is better if a SALT delivers the therapy and the TA observes this and delivers the programme on a daily basis in school. For example if the SALT is working on teaching him rote learnt scripts to join in with other children, the TA can practise this with him in the classroom and playground and prompt him to use those scripts until he is doing that independently. However this level of support and detail is highly unlikely unless it is in a Statement.

 

So you have to look at the diagnosis, what difficulties does that mean he has, what are the implications of that, have all the needs been identified by professionals and are they being met in school.

 

As he has dyspraxia an OT should be involved. Has he been referred to one? The waiting list is horrendous (2 years in our area). So get on the list. The OT is also responsible for handwriting difficulties - which are commonly part of dyspraxia. Also sensory issues.

 

You can download the SEN Code of Practice from this website.

Also contact the National Autistic Society and get your name down for seminars about the HELP programmes (for parents of newly diagnosed children). And also any SEN seminars they are doing in your area.

Get in touch with your local Parent Partnership.

Use the NAS Educational Helpline and the IPSEA Helpline and this forum for help/advice.

[Sally44]

Although you say the triple diagnosis is hard to come to terms with, it is worth knowing that alot of children on the spectrum do have this combination, but the diagnosis of dyspraxia and semantic pragmatic speech disorder is not always included. This leaves parents having to try to seek further dx for their child's needs to be met in school. It is always hard to get a second or third dx and many parents are forced to go private with the fees that that involves.

So, in actual fact, having the dx now at 6 years old actually works in your favour.

 

For example with SPSD it is going to be very hard for SALT to discharge your son because he has a speech disorder and a disorder is for life. And if they attempt to, you should fight tooth and nail with his dx to keep SALT input in place. So if SALT remain involved, there is much more chance that the need for their input regarding social use of language is also going to be met - but again you will need to keep pushing for it.

 

The dx of dyspraxia means an OT should be involved - again parents can fight for years for the recognition that an OT needs to be involved. If OT is involved and dxspraxia is also impairing his writing ability, then they are already on board without having to wait a further long wait. But again these are needs that you should be aware of - but your child may not necessarily have hand writing problems. But if he does, then you already have the OT to talk to about it.

 

These three dx also mean a more 'complex' and vulnerable child, and therefore increases your chance of getting a Statement.

 

Then having got a Statement these dx mean you have a better chance of getting a more experienced school with expertise in these dx for your child. All special or specialist schools need a Statement for a child to get a placement. Without a Statement the only option is mainstream.

 

So although it looks like the cup is half empty - in actual fact it is nearly full: so the outlook for provision and support actually looks better.

 

 

[lucyemma]

Thank you so much for all your great advice sally44 I really appreciate it. The psychiatrist did say she would try and refer us to an OT for his dyspraxia to help his coordination (his handwriting is also pretty bad). Will certainly start reading up on the SEN information as school are really dragging their heels with this and ds seems to be slowly losing interest with this school (he only started their in November).

 

I'm feeling a lot more positive about things now. Hopefully we should be able to get ds some sort of support. Looks like I'd better go and start reading up on things!!

 

[Kathryn]

Hi Lucyemma,

 

I think many people will identify with the mixed feelings you describe on receiving a diagnosis. Take some time out for yourself, because it does take some adjusting to, even if you were expecting it. Remember he's the same little boy you've always known, even with all the new labels attached.

 

Take care

 

K x

 

 

[smiley1590]

i have AS and dyspraxia and i know how hard it is to fight for official diagnoses like that! so well done even though 2 unexpected popped up there it was good news in long run as now can battle for help and support for your son to best suit his individual needs!! and now have more detail and information on why may find things trebely hard going for him!

 

good luck!

fingers crossed for you

XKX