To not pursue any further assessment

[Vengabusiscoming2019]

DD is five. There has always been concerns about her developmentally with 5050 on ASD and a wait and see needed. This has been ongoing since she was 22 months.

I'm exhausted by it all. Yes I have major concerns but she is happy at school. I don't see what benefit any further assessments may have. Has anyone who has had concerns specifically chosen not to pursue investigating them?

My Ds has a diagnosis of ADHD, he is on the asd pathway

I would advice you continue you it is such a long road simply because it is the gateway to support.

My Ds was amazing in reception as he went through primary the problems became more apparent .

It is an exhausting process

But is it actually the gateway? I thought all needs should be met with or without a diagnosis?

They should be bit with thinning budgets something is to give

Ds has always had autistic traits. We realised when he was about 7 that he was probably autistic. School made a few comments but nobody seemed that concerned. He seemed to cope through most of primary so we didn't pursue a diagnosis.

That was a big mistake. He is now 15 and was diagnosed two months ago. He has not coped at secondary school. Things are now really difficult. I regret not pursuing his diagnosis earlier. Unfortunately now he has quite significant mental health issues, I think probably caused by the lack of support at school and him not understanding why he wasn't coping.

My advice would be to pursue it. If she's not autistic they won't diagnose it. But if she is the diagnosis may help going forward. Going into secondary school undiagnosed is awful, well it was for Ds anyway.

It will probably be more helpful to do this now, not if or when your child begins to become more unhappy, which may have a relationship to the condition. I do hope that eventuality never comes up but: it may do. It also bites very deep to have to go through the assessment when a bit older (or a lot) with the additional realisation of potential humiliation or extra stress at the point of 'needing' it to qualify for extra time in exams or similar compensatory aspects (that could make a difference). Plus, whatever age you take up the banner to go through it, it's not quick and often not plain sailing so best got through earlier and by the end of primary school I'd say.

I would keep going with it. Mine was ok-ish up to year 2. Then I saw things really start to unravel. There was no support without that diagnosis even though it's supposedly 'needs' not diagnosis which counts. Took 5 years from then to get diagnosis and a further 2 to get a Statement of SEN. She's 14 now and we're still battling to get her needs met at school. Meanwhile she's lost her childhood, overwhelmed with anxiety, isolation, suicidal thoughts and self esteem in her boots.

Without a diagnosis it is much harder to establish what those needs are and then to get them met. I really would persevere, OP, even though it's hard.

Echoing previous advice of pursue, with an official diagnosis my son not only has appropriate support in school but now he is getting older is eligible for assistance with transitioning to college /work

It also means I can claim DLA for him which then goes towards things like audio books (also has severe dyslexia)

Will she be happy at school at 14? And will being happy be enough?

I would pursue. My son didn't have any major issues until y1 when they were expected to do more focused work compared to the play based learning of reception. It took the best part of 18 months from referral to diagnosis so I would keep her in the system so to speak meaning you don't have to go to the back of the queue when the wait and see phase ends and they move onto getting the actual help and adjustments.

Knowing, especially from a young age, can be a massive help in the young person understanding who they are and why they may seem different to their peers.

It can also help others understand

Pursue it, it's far better to have the diagnosis in place now while shes settled than wait until shes struggling as it will delay getting her the appropriate support if/when she does need it.

Although it might well seem a pain at the moment pursuing a diagnosis, please don't give up!
You just can't predict what the future will hold and how your dd will be, all too often you hear about people with undiagnosed autism experiencing mental health issues later in life.

I would keep going. It should be done on needs alone, but without a diagnosis my dd got virtually nothing. Especially as she masked at school.

She has found things harder and harder as she got older, she found reception fine.

Another vote for pursuing it. You don't want to be in the position of waiting for 2 years for a diagnosis when the wheels fall off later on.

In an ideal world support should be given before a diagnosis. However, in reality my DD had next to no support before she was diagnosed.

Please don't give up OP, you may well only have to go through the whole process again in the future anyway. In my experience, issues become bigger as they get older. Waiting until she is struggling is going to be even more of a pain in the arse, do it whilst she's happy and settled. Support is supposed to be needs based but I found it so much harder to get any help before diagnosis. The diagnosis is worth everything.

The system is overloaded and if there was no point in them doing further assessments, they'd have said so by now. They obviously see something you don't, so I'd advise you, like everyone else on the thread so far, to keep up with the assessments.

If you remove her now, because you think she's fine, then she starts to struggle, which is highly likely if she does have ASD, you'll have to start again from scratch.

Effectively you'll have a child who is not coping and you'll have an 18 month to 2 year wait to source any help for her.

Agree pursue. A late diagnosis can really compound any problems

To add to my earlier post, if it is autism or a combination of ASD traits (often arise in combination), it won't just get better or be something to grow out of. It may just be masked, stamped down and hidden, if she is lucky enough to know what it takes to try doing this, but I can tell you from experience this is exhausting and destructive. I went through assessment as an adult, way past any academic stage - and it was no walk in the park to take the battery of tests either. I tried to take the view it mattered so little now but couldn't convince myself. I've known people going to be assessed from postgraduate stage to almost retirement (via a good student support centre in a university) and not being sure ate away at all they were, too, for a while, but they still had the want/don't want to find out drive, so I can only think that certain issues they always struggled with but never wanted to share, were still having an impact on them at the stages of their career.

Keep going. With a diagnosis you will have a better idea of your DC's needs, and the school might be able to get additional support - that is, money to pay for additional TA time. TA's are stretched thin and if a child is coping, that child is unlikely to be a priority when there will be others in the class who not keeping up.

As a secondary senco i advise getting a diagnosis as early as possible; it takes a long time anyway, but while primaries can generally do a reasonable amount in classeoom, secondaries have much more difficulty providing support. Having support /at least thoughts in place makes secondary so much easier

Definitely pursue- girls with ASD are often very good at 'masking' and often are internalising many more difficulties/ anxieties than they reveal to others.

In terms of schooling, no diagnosis holds a magic key to extra support (especially if the child's diagnosis doesn't come with provision for additional adult support) but it will definitely help if teachers know what needs a child has.

If a child has an EHCP, they also get priority admissions into any school of their choice (over and above catchment area, siblings, etc).

Dsil ignored all concerns made by school about her ds even going so far as moving schools when the SENCo wanted to make a referral to Ed Psych.
Dn got his ASD and dyspraxia dx aged thirty but he has spent his whole life wondering what was wrong with him, why he found things so difficult when his cousins seemed to manage with no effort.
I think if concerns were raised so early then they must be significant tbh and if your child is on the pathway it's better to continue than pull out and start again at a later date.

@AbsolCatly

Can I ask who is giving the help transitioning to college? My dd is looking at college next September and it's going to be a big shock to her I think. She has a diagnosis but not an EHCP.

flump ds is year 11 without an EHCP and absolutely no one is helping him with the transition to post 16.