A Problem Shared: Where’s The Autism Support For My Daughter?


A Problem Shared Education Health Parenting & Family Advice | by | 11th Nov 2016

Autism APS

Mum Lisa is worried about the level of support her daughter, who has autism, is getting. Do you have any advice or support for this week’s A Problem Shared…?

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Hello FamilyPoint,

My daughter is 9 years old. She was diagnosed with autism last year. We had been receiving fantastic support up until July when our support worker went on maternity leave. The charity that has been helping us have not contacted us since. Anwen is becoming increasingly frustrated and aggressive. This is having an impact at her school.

Her teacher is helping her where she can. She gives Anwen ‘time outs’ when she starts to struggle. But I just got a letter saying that they won’t be taking her on the school bus in the mornings. She’s apparently causing too much trouble.

Yet I rely on the school bus so I can get to work on time. What can I do to challenge this decision, and get more help generally?

Lisa, Swansea

Our FamilyPoint reply to Lisa

Dear Lisa,

Thank you for contacting FamilyPoint. It sounds like you have been coping really well with your daughter Anwen’s autism diagnosis. It can be really difficult to know where to turn when a new challenge presents itself as a parent.

You are not alone. In fact many parents in similar situations struggle if they don’t have good support. Luckily, because many have been through similar challenges there is loads of support available out there for you.

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I have identified some issues which you have talked about in your letter and suggested some resources you may find helpful.

  • Identifying a replacement support worker or similar support plan
  • Addressing Anwen’s behaviour and helping her manage her emotions
  • Communicating your concerns and discussing your rights with Anwen’s school about her education
  • Challenging the decision to not allow Anwen to use the school bus
  • Accessing autism related support

Identifying a replacement support worker or similar support plan

It might be a good idea to contact the charity who provided your daughter with a support worker – if you haven’t already. You could say that your support worker was fantastic and ask if a temporary replacement is available? If you don’t have any luck there, try contacting The National Autistic Society Cymru (NAS Cymru) and/or SNAP Cymru. They may be able to point you in the right direction (details below).

Addressing Anwen’s behaviour and helping her manage her emotions

Anwen’s recent change in behaviour and her expression of frustration and aggression are not unusual. NAS Cymru explains that people with autism can find life changes difficult to cope with. They talk about some behaviours you might expect and offer excellent tips to help you both manage it. Perhaps these resources might help support her class teacher too? See autism.org.uk/about/behaviour. Alternatively you can call on 0808 800 4104 or use their online enquiry form for support, info and advice.

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Communicating your concerns and discussing your rights with Anwen’s school about her education

I understand your concerns about your daughter’s education. I also realise that it is important for you to be able to get to work on time. It must be stressful for you but – never fear – help is near! Before you speak to the school about your concerns, find out what you are entitled to by law. NAS Cymru have outlined rights to school transport but it is a complex issue. I recommend contacting The Education Rights Service on 0808 8004102. Their webpage says:

“Our Education Rights Service provides impartial, confidential information, advice and support on education rights and entitlements for parents and carers of pre-school and school-age children with autism to help them get the educational support their child needs.” (NAS, 2016)

Challenging the decision to not allow Anwen to use the school bus

Once you are armed with information, you can approach the school with some solutions and suggestions. You might like to do this informally at first. If you need to be formal remember to consult and follow the school’s policy on the process for challenging decisions. Our best advice whether you approach formally or informally is: be calm and express yourself clearly, outlining what your daughter needs. SNAP Cymru have some excellent letter templates if you are required to put something in writing.

If you don’t have the confidence to talk with the school or think you’ll lose your “cool”, get in touch with SNAP Cymru. They have a great website – explore it at www.snapcymru.org. Not only are they knowledge experts in relation to disability and additional needs, they also provide advocacy services.

An advocate speaks up on your behalf and is your “voice”. They can assist you by putting across your point of view and making sure your rights are heard. For information, advice and advocacy call SNAP Cymru on 0845 120 3730.

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Accessing autism related support

Parents have the most amazingly satisfying but toughest job on the planet. Having access to the informal support of like-minded parents is a golden gift. Thankfully, parents throughout the UK have recognised the value and necessity of these things. Below, you will find a list of organisations and community groups who can hopefully meet your needs.

Parenting. Give it time. This insightful Welsh Government resource isn’t specifically targeted at parents of children with autism. However, it does have a useful section on managing your own stress levels and general parenting tips.

Community (NAS) – Another gem of a resource from the National Autistic Society. This UK discussion forum enables you to connect with people with an interest in the autistic spectrum. You are invited to share your thoughts, feelings and experiences. The forums’ members include parents, carers, professionals and people with a diagnosis of autism.

The Autism Directory – A directory of all things autism! This fabulous resource is put together by individuals in the “Autism Community”. It provides a wealth of information and links for just about every autistic imagining. Free holistic therapies for carers 0 right on! Sensory exploration adventures for people on the spectrum – yep! Autism friendly holidays – check! Local support – you got it!

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If you would like further information on national or local support services, then you can contact us at FamilyPoint Cymru via phone 0300 222 57 57, text 07860 052 905, or IM/Chat. We are open Monday – Thursday 6pm – 10pm and Friday & Saturday 10am – 2pm.

Regards,

The FamilyPoint Cymru Team


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A Problem Shared… is your space to share both your problems and your advice with the FamilyPoint Community.

Got a problem you want to share? Ask us now. Got advice you want to share? Leave a comment below or write an article for us!

Check out our recent ‘A Problem Shared…’ posts for more family advice:

Guest Post: Autism Isn’t The End

Q&A: Raising A Child With Autism

A Problem Shared… Autism & Anxious Behaviour

Guest Blog: “Why’s Matty doing that?”


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