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Ask Ellie on Autism

Letitia Bright asked Ellie about autism Photo:

Hi ellie my question is why is the help available for autistic children diagnosis first? So many families are left with little or no help while awaiting the ASD assessment. The assessment waiting lists are so long and meanwhile parents and children are left to suffer.

– Letitia Bright via Facebook
Letitia Bright got in touch with Ask Ellie

Letitia thank you so much for getting in touch. I've been in touch with The National Autistic Society. Tim Nicholls who is Policy Manager has given you this following answer. Ellie

Tim Nicholls from The National Autistic Society

Letitia, you also asked a second question.

I also have another question why has the criteria for Educational health care plans gone up? Many children with special needs are not getting the help they desperately need and are not reaching their full potential. Surely there must be a way for parents and children to get the help they deserve without the constant fight and battles with health professionals and schools. We already have so much to deal with.

– Letitia Bright via Facebook

Tim Nicholls from The National Autistic Society replied with this:

Here's a written response too:

1) Why is the help available for autistic children diagnosis first? So many families are left with little or no help while awaiting the ASD assessment.

Legally, people should get support based on their needs, whether they have a diagnosis of autism or not. But, in reality, we know that public services are under great pressure and a formal diagnosis is often needed to unlock the support people really need.

Yet the average wait for a diagnosis is over two years – just last weekend I met a family who battled for nine years to get a diagnosis for their son. No-one should ever have to go through this, just to understand who they are and to have a chance of getting support.

This is why we're running a national campaign to draw attention to this issue and to call on the Government and NHS England to take urgent action to reduce waiting times. We want the Government to start monitoring waiting times across England, so we can measure performance, work out what’s causing delays in different areas and ultimately improve services. National guidelines say there should be a maximum of three months between being referred for a diagnostic assessment and a first appointment. If Letitia or any others would like to get involved in our campaign they can do so on our website.

Our website also has lots of information, advice and strategies. It also has lists of local support groups which may be able to help. We also offer impartial, confidential advice and support via our Autism Helpline, which is open Monday to Friday on 0808 800 4104.

Thank you for raising this important issue. I hope this information helps.

2) Why has the criteria for Educational health care plans gone up? Many children with special needs are not getting the help they desperately need and are not reaching their full potential. Surely there must be a way for parents and children to get the help they deserve without the constant fight and battles with health professionals and schools. We already have so much to deal with.

Autism can have a profound effect on a person and many struggle with things that others find easy or even enjoyable – for instance, a small change to the day’s schedule, like the school bus turning up late, can feel like the end of the world to someone on the autism spectrum. Autistic people are often oversensitive to things like light and sound so can struggle to learn or even feel physical pain in overly bright or noisy classrooms. This means they often need extra support within their existing school or specialist provision to reach their full potential.

But, as Letitia has pointed out, far too many parents face long and stressful battles to access this support. The Government introduced a new system of special educational needs (SEN) just over to a year ago, promising it would be simpler to navigate and give parents greater control. They made a number of promising reforms including extending the time children and young people are eligible for support from 0-25 and replacing statements of SEN with Education, Health and Care (EHC) Plans.

But a report we released earlier this year showed that many parents are still facing similar problems. We think the reforms are being let down by poor local implementation and have called on the Government to take action.

As for your point about criteria, the Government’s position is that the same people receiving statements should also be eligible for EHC Plans – so there shouldn’t actually be any change. However, Government figures suggest that parents may be finding it harder to get statutory support under the new system, with the number of statements and EHC plans issued in 2014 actually lower than in previous years. 15% of children and young people whose existing statement was reviewed in 2014 as part of the transfer to the new system did not receive an EHC Plan.

I hope this helps, if you have any more questions, we’d strongly recommend contacting ourEducation Rights Service. They have lots of useful information online and also run an advice line.

So Letitia, I really hope this helps you and your friends. If you have any more questions please do get in touch. Ellie

Ask Ellie is now available to you 24 hours a day. Ellie Barker is our Good Morning Britain presenter at ITV West Country. She's here bright and early and ready to help. You can get in touch in the following ways:

Email: askellie@itv.comTwitter: @elliebarkeritvFacebook: itvaskellie

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