Worth pursuing formal DX of AS to gain help at school ?

[mjuyhn234]

I'm a long time lurker. Hoping the good folk of mumsnet can help me out. My lovely quirky DS in year 6 has always been a little bit different. He's a bit Aspie but doesn't have a formal diagnosis. He has seen various professionals over the years but no fast and firm judgements have ever been made. Feel like we've been going around in circles for years.
He's a very happy laid back chap, comfortable in his own skin and is his own person. He sees himself as like everyone else and doesn't think of himself as different (he is!). He's had an Ed Phy assessment done which supports an ASD dx but we'd need to get another professional to back this up to get a formal dx.
I worry about him starting secondary school. He's average academically, well behaved and I fear he will just fade into the background.

Do you think a formal DX of ASD will guarantee additional help in Secondary ? I'm hoping the Ed Phy report should provide the information that will help him be supported from the academic side.

Thanks for reading.

Apologies for the daft username, I got a bit fed up tring to create one that wasn't in use.

[Killasandra]

No, I don't think a formal dx will necessarily help.

It may, or it may not.

In a good school it won't help, as they'll see what he needs and will do it without a dx.

In a bad school it won't help, as they'll ignore what he needs anyway.

So it's only in a medium school, that wouldn't necessarily see what he needs, but would support him if they knew more about it that it might help.

What kind of help do you think he will need?

And is all that help written into the EP report?

A dx most certainly does not guarantee additional help.

[MarianneSolong]

My experience is that I believe a diagnosis may have helped my stepson. It was only later that we realised ASD was probably the underlying reason for various struggles he had

While at primary school - small, predictable, structured, a single class teacher - he did pretty well, but his academic performance and emotional well-being went downhill at secondary school. It's a more confusing environment, and he found it harder to process. This is quite a common development.

He's having some difficulties as an adult - with work, relationships etc and my husband and I really regret that we didn't try to get him support at an early stage. As a teenager he really did realise he was different, though as a child he did not have that kind of self-awareness.

Also while some support is available for children, it's less easy to get support for adults without paying - so I'd say there are arguments in favour of getting a diagnosis at earlier stage,

[BrieAndChilli]

I'm debating this although ds is only on year 3 at the moment
Last appt with consultant a few months ago ended with the conclusion that he will always have aspergers traits but because he has made such amazing progress the last couple of years she didn't feel there was a need to formally diagnose him at the moment but she as he nears secondary school we may feel he needs more assessment In order to makeh e change to secondary.
The main thing for me would to enable more time during exams or the use of a laptop as his writing is poor and the level of his writing when using laptop at the moment is miles better than when handwriting as he doesn't get tired and give up writing

[Killasandra]

Brie - his poor writing isn't due to aspergers.

It's probably due to dyspraxia which is very highly co-morbid with aspergers.

Anyway, you don't get to use a laptop because you have a dx of aspergers. You get to use a laptop if the school can prove he needs it.

He doesn't need a dx to use a laptop.

Same with extra time. To get extra time you need to prove very poor processing speed or something like that. Not aspergers or dyspraxia or dyslexia.

[lljkk]

You have to weigh against the hassle to you in trying to get the diagnosis. Most people say it's a huge stressful hassle to try to get formal diagnosis, often unsuccessful.

[BrieAndChilli]

That's good to know. I was inder the impression you could only get extra help with exams such as a-levels if you had a statement.
He's on a School Action Plus plan and has been since he started school which included actions put in place to help with his poor fine motor skill, poor core muscle tone and hyper mobility issues so assuming then that this would be enough? He does use the laptop now for instances when the task is focused on what he is writing or creative story as opposed to how he is writing such as joined up writing practice. He is also given touch typing lessons once a week.

[mjuyhn234]

Brie: Sounds like you are going down the same path as I did. My DSs difficulties with school work came more apparent with the move to Year 3. Up to that I'd been told he was doing OK, though I had my doubts.

I'm really debating if its worth the hassle of going for a DX. The Ed Phy report has flagged up poor processing and working memory so he should in theory be entitled to extra time in exams. I'm really pleased that we got it done as it's helped me understand his difficulties better and where his strengths lie. Lap top also has been suggested along with touch typing course.

With a lot of work, his handwriting has come along way in the last 2 years, still quite slow but legible. He has Aspie traits but they are all very subtle so it may be hard to get the DX?

We went private for the report as I wanted in the 'bag' before secondary. It was expensive but I feel better equipped to help DS...and felt like I was being proactive. Up to that, it felt like pillar to post and back again.

I've heard good reports about his future secondary school so hoping that an official 'stamp' isn't required to keep him on their radar. My original question was does DX actually translate to additional help, from replies not sure it does!

[Killasandra]

Brie - Best thing to do is

a) start talking about it with the SENCO in Y9 before he starts his GCSES

b) Google 'access arrangements' yourself and understand what the SENCO has to do. It changes every year......

c) A dx of aspergers won't get you a statement by itself

[Killasandra]

A DX does not translate to additional help.

[SantasLittleMonkeyButler]

I would say yes, from personal experience.

Your DS will not be treated any differently or given a TA simply because he has a diagnosis but should he need help in the future - including a scribe or extra time for his GCSE's - a formal diagnosis will make accessing that help easier.

DS1 has Aspergers too & was only given a formal diagnosis on paper at 14. Although I must admit, he never coped as well at school as your DS sounds to be.

[wannabestressfree]

Mmmmm as a teacher I would say no. Remember things have changed so he won't be sap when he goes to secondary to start off with. Statements are EHP and few and far between.
We have children assessed quite early on for access arrangements and lots have no formal diagnosis (my own child has a reader and scribe and 20% more time)
I have another child with autism and it took three years and three attempts to get his statement.
I work with lower ability children and the work is differentiated for the whole group not specifically and I have 10-15 with differing problems. Very few are allowed a laptop and if their need is that great they have a scribe for exams.

[wannabestressfree]

So no Diagnosis doesn't mean more help.

[wannabestressfree]

And I know this view may not be popular but I read dozens of ed psych reports in a week. I probably implement one or two of the things they recommend, some are just plain impractical, some I already do.
I only have one child in the whole school who always uses a laptop and he has a statement (EHP)

[BrieAndChilli]

Ds is very academically able which helps with school. There are also a couple of other boys in his class who are clever so although he's not bothered about friends he does chat at school, teacher says they sound like little professors, but I do worry about him going from a small protected primary (rich area, lots of Middle class family's, I think FSM is less than 1%) to a big comprehensive and I wonder of having a formal diagnosis will enable him to access support he won't get otherwise?

[wannabestressfree]

I work in a big school and live in such an area as you describe. He won't get anything 'extra' with a diagnosis. His senco at primary will make them aware of his needs and he will in turn be on the register at the secondary. Access arrangements are sorted out later on. We only have access for formal exams anyway- possibly some end of year, not termly though. It's not feasible.
It sounds from what you have described you may struggle to get one anyway? The school would access the ed psychs report anyway and do what they can.
I would wait and see what happens. And discuss it with the senco at the secondary.

[wfrances]

ds 16 has lots of traits but no dx
he has had all extra support in comprehensive school,he has a iap.

he just sat some early gcse s and was allowed to take them by himself and had extra time .
so a dx wouldnt change anything.

[MummyTheBlueengine]

My DS has ASD and Statement. The DX was a battle and took 4 years. We got the statement at the end of year 6. Now DS is in 6 form. Without the statement he would not even be at school. It was absolutely instrumental for my DS. Although, perhaps, my DS is a more "severe" case than yours.

All the same, SN provision is a process. You need to follow the yellow brick road.

I would suggest concidering carefully what MarianneSolong said, and getting some opinions on the SN children board as well, if you have not already done this, OP.

Is you DS achieving in line with his potential? Are all his needs well understood and fully met? The help your DS receives at school is only going to be helpful if they understand exactly all of the problems and use the right tools. It seems the support you DS is already receiving is based on the assumption that he has ASD. If you DS is "average" is that because of his well documented congnitive tests, or is it because he underperforms without the right help, even though he is getting some?

A lot of DC on the spectrum have problems at the transfer to secondary school and the right support with the right intensity might be crucual. Without the DX, this very much at the school's discretion and if your DS will struggle and underacheive, the school will dismiss that as his average ability.

Yes, a good school would provide the support without the DX, under the speculation that he has ASD, but they may miss a trick, there is also the small question of money and resources. As Wannabestressfree says, this is at the school's discretion and they may schoose which EP advice to ignore if they feel it's "impractical".

I think in the situation of ancertainty you should follow the process. The process would guide you to the right decision when the time is right. First is to identify all of your DS's needs. The school gotten EP and they advised to get a DX- so that is the next step. If DX is confirmed, you will have much more levers and tools at your disposal and the school will have much less discretion..

SN provision is a process and you need to drive it, pushing all the buttons and tightening all the srews. Without the DX you don't even have access to much of this machinery.

Special needs are for life and at every new turn there will be new challenges, having a DX helps to choose and get the tools when needed. It is much harder to get a DX after 13 and even more difficult in adulthood.

[mummytime]

I would push for DX, but not expect specific help from it.

BUT it can be helpful to explain problems both to your DS and his teachers. This is even in a very good school.

I would also recommend it before hormones hit, so you have time to prepare yourself and communicate first.

Knowing that you think differently from others and why, is I believe very valuable even if you can "pass for normal". Getting a diagnosis when under 16 can be easier than as an adult.

[cricketballs]

My DS (more severe needs than your op) has had a statement and has attended a special school since tbe age of 4 without any dx other than it was very obvious that he had LD.
We have finally pushed for a dx as he is now in yr11 and we became very concerned regarding his adult future without any formal dx (never bothered before as his school is fantastic and more than meets his needs and his need for a statement has never been questioned). He formally has MLD (although I did question why Moderate rather than severe given his IQ and report) and ASD.

Whilst this is not helpful for your situation, the fact that there is a formal record has helped us as parents as if anything was to happen to us and we were no longer able to fight for him it is clear that he has these needs therefore they have to be taken into consideration by the LA/SS if it came to that

[BackforGood]

I think the first reply, from KillaSandra hits the nail on the head, tbh.

She's right - as other posters have said - that a diagnosis of anything doesn't equal automatic support in school, but if it were me, I'd be inclined to push for a diagnosis if I felt he had any form of Autism, as (as KaS said), there are some school, and some staff in schools, who will 'click into action' when there is a formal diagnosis, but might not take so much notice of a parent telling them they "think he might have....". If he's lucky enough to go to a school that meets his needs anyway, then the diagnosis won't have done him any harm, but if he ends up at a school where there is less automatic adjusting to meet individual children's needs, then it will help.
Don't forget, that staff change over time, so having a great SENCo when you look round a secondary school doesn't mean the same person will be in post by Yr8, say. Also, schools are under a lot of pressure to measure everything by 'data' - there will be lots of initiatives going on for children for certain groups - including those with particular needs - and he might be better to be on the radar of the data trawls rather than not.

[Pasteurella]

To be honest, even with a diagnosis, if you don't have a statement then help can be a pit patchy. I've got two diagnosed as having ASD (they don't diagnose AS any more where I am), I would say fairly similar levels of ability. For complex reasons one got a statement (DS2) and one didn't (DS1). Although at times it seemed DS1 needed it more.

The one with a statement has loads of help - SALT, OT, autism outreach center advice, LSA full time etc.

The one without (diagnosed with ADHD as a co-morbid) has very little help. Has had a bit of OT and SaLT, also sees autism lady once a term. Who's doing better? The one with barely any help, because he's learned strategies to cope on his own and has a good sense of his own competence iyswim. He's had harder times than his brother, but has learned by them.

That's not to say that the help DS2 has had has been wasted, but I wonder sometimes if we're creating more dependent children like this? Maybe they do need to struggle a little to gain confidence in the long run, maybe that's how they build their emotional strength up?

Anyway, just a thought, feel free to discuss

[LonnyVonnyWilsonFrickett]

Support costs money. Money is being stripped away from support. As wannabe has just indicated, even where recommendations are provided, it's not guaranteed that teachers will implement them (and thanks for your honesty there wannabe but also ).

So should you pursue a dx? Well, where you have 2 children with the same needs and only one has a dx or statement, I would want my ds to be the person with the dx and the statement. It gives you some protection. It also helps you as a parent understand more about your ds. It also, vitally I think, will help your ds understand himself. And there's a lot of 'positive identity' stuff starting up in the ASD community, which is great to see.

No-one can predict if a dx will get you more support at school - although of course it should. But life is long. Do you think having a dx will help your son and your family longer term - I think that is the question to ask.

[Killasandra]

My 2 boys both have Aspergers. But only the eldest has a dx. The dx brought so little with it I decided not to bother for the younger one (although he has a dx of dyspraxia)

I don't think anyone's ever noticed that one has an official dx and one doesn't

Looking round secondary schools for DS2 all the SENCOs were happy for DS2 to have the same support DS1 has. A learning mentor to talk to. Time out cards. A laptop. That's all my boys need.

They've both had various social skills interventions / quiet places to go to / support at lunch time stuff through primary. But they don't need that now they're older.

[Killasandra]

I don't think schools care one bit whether a child has 'ASD traits' or ASD.

If the support your DS needs is free and easy for school to do (like a time out card or a laptop you supply) you will be able to get it.

If it's trickier to provide or more expensive - I still don't think a dx will help you get it. Clear persistent communication is the key - and a lot of good luck.

[youarekiddingme]

My da is same age and year as yours. We are expecting his assessment with an outcome of aspergers in May. It has not affected his support as his school are trying to meet all his needs. Although we obviously have to change with him and it takes a bit of trial and error to get it right.

He is a gifted mathematician but poor at literacy. A physio said he has probable dysgraphia and a dyspraxia symptomology. The salt and ed psych also said he has poor planning and processing skills and social communication difficulties.

I would say seek a dx. People are right that makes no difference in a good school meeting his needs but it will make it possible for him to have allowances made and an identity for him.

My DS overheard his ELSA say he had autism (not her fault he shouldnt have been where he was!) and was really upset. When I explained what It is he looked up and said "that explains why I am the way I am". It seemed like a relief to him - I have to had to explain they only think he has it ATM.

Secondary can be a blessing or extremely difficult for a child with AS. It's more likely they'll find like minded students as its a bigger cohort.