Understanding the diagnosis

A staff nurse with parents and their baby, talking

AWARE Airedale and Wharfedale Autism Resource tel. 01535 661275  Mobile: 07826 926150
Email: info@aware-uk.org  https://aware-uk.org/

Specialist Autism Services : A non-profit organisation that works with the charity providing autism specific services across the Yorkshire region.

Cygnet: An educational course from Barnardos for parents or carers who have a young person with a diagnosis of Autism.

The UK ADHD Partnership: an online resource that can offer further information about ADHD.

Adders: Aims to promote awareness of ADHD and provide information and practical advice to those with ADHD and their families. They have lots of information, downloadable resources, and a comprehensive list of local support groups.

The West Yorkshire ADHD Support Group: a Facebook based support group with signposting to local events.

The National Autistic Society: aim to transform lives and change attitudes to help create a society that works for autistic people. They offer lots of support and guidance on their website.

Autism Central: a website set up by nine non-for-profit organisations designed to offer parents and carers of Autistic people easy access to Autism education, training, and support.

Education Support & EHCP

An EHCP (Education and Healthcare Plan) is a legally-binding document outlining a child or young persons special educational, health, and social care needs. These can be applied for if you believe your child’s educational needs are not being met in their current setting, and outlines adjustments that can be made.

There are also some other organisations that may be able to support an EHCP application:

Bradford SENDIASS  Tel: 01274 513300; email: bradfordSENDIASS@barnardos.org.uk: Independent service offering advice and support for a range of topics, including SEN provision, assessment processes, EHCPs, reviews, transitions, exclusions, transport, appeals, local policies, and SEN code of practice. Support may be provided on a 1:1 or group basis according to need.

ACE Education Advice Service Tel: 0300 0115 142; offers parents/carers information and advice on anything relating to education, including bullying, SEN provision, government guidelines and exclusions. There is plenty of information on the website plus a term-time telephone helpline.

Independent Provider of Special Education Advice  provides support and next step advice to help parents understand their child’s legal rights and help get the right education for them.

The request to assess form can be accessed on the SEND portal Bradford on Bradford council website.

Support for parents

AWARE Airedale and Wharfedale Autism Resource tel. 01535 661275  Mobile: 07826 926150
Email: info@aware-uk.org  https://aware-uk.org/

Barnardo’s Cygnet Parent/Carer Support Programme: Tel: 01274 513300 For parents and carers of children aged 5-18 years with ASD. A programme delivered over six 2-3 hour sessions covering topics such as: ASD and diagnosis, sensory issues, and understanding and managing behaviour.

Sunbeams: A parent run support group for parents and carers of children with disabilities and special needs, including Asperger’s, Autism and delayed development (North Craven).  Tel:  0845 034 9408 or email northcravencc@northyorks.gov.uk

Early Help: Tel: 01274 435600 offers keyworkers to help provide behavioural support.

Mental health and wellbeing

Youth in Mind: A partnership of services supporting 11–19-year-olds in Bradford District and Craven who are struggling with their social, emotional, or mental wellbeing. For those with special educational needs and disabilities, they accept referrals up to the age of 25.

The Mix: Tel: 0808 808 4994 Support for young people under 25 years.

Step2Counselling: Offers counselling for young people.

Kooth Service: Online counselling and emotional wellbeing platform for children and young people, accessible through mobile, tablet, and desktop for free.

Supporting children with ‘meltdowns’

  • Neurodivergent children and young people may have ‘meltdowns’ for many reasons. Some factors that lead to a young person feeling overwhelmed could be tiredness, sensory overload, a tendency for overthinking and rumination, relationship issues, hunger, pain, and difficulty coping with demands.
  • If children are very heightened, it can be difficult to reason or talk with your child at that particular moment in time. It would be important to ensure everyone is safe in the house first, and then think about allowing the child a safe space to come out of the intense emotional state first.
  • Some children may find it difficult to cope with lots of verbal information at this time, so try and keep directions to a minimum and ensure they are short and clear. It can be helpful to avoid asking lots of questions at this time.
  • Some neurodivergent children and young people may struggle to talk about emotions. They may struggle to understand what emotions feel like in their body (alexithymia), so they do not recognise when they are becoming distressed until it is extreme. It may not be possible for them to talk about emotions in the midst of a meltdown so it may be better to avoid asking them to explain their feelings at this time.
  • Validating emotions and reflecting back to the child can be helpful, e.g. ‘I can see that you are getting upset. That must be horrible for you.’
  • Allow the children and young people time to recover when emotions are spiralling. Often children can struggle with very difficult emotions such as rejection, shame, feeling criticised etc. These emotions can be so difficult to experience, they are often projected away as extreme anger outbursts. Knowing that you as a parent are still there for them despite the intense emotion that they are experiencing will be important to help children know that the people around them can tolerate their distress with them.
  • A child may not be able to self-regulate themselves when highly aroused. Supporting them to regulate and bring down their emotions can be helpful. A safe sensory space, music, repetitive movement may all be helpful strategies to help a child practice managing their emotions.

Support for children who ‘mask’

  • To ‘mask’ or to ‘camouflage’ means to hide or disguise parts of oneself in order to better fit in with those around you. It is an unconscious strategy all humans develop whilst growing up in order to connect with those around us. However, the strategy of masking is often ingrained and harmful to young people’s wellbeing and health. Young people may experience pressure to hide their true selves and to fit into a neurotypical culture.
  • Sometimes children will ‘mask’ difficulties at school if they are trying very hard to not show their difficulties. Often children may present very differently at home and at school. Good communication between home and school may also be helpful, so parents can make sense of any changes/incidents that may have occurred within the school day.
  • Masking may involve suppressing certain behaviours that neurodivergent young people find soothing, such as stimming or intense interests. It can also mean mimicking the behaviour of those around us, such as copying non-verbal behaviours, and developing complex social scripts to get by in social situations. With this comes a great need to be like others, and to avoid the prejudice and judgement that comes with being ‘different’.
  • The best solution to reducing the need for autistic people to mask is to spread awareness of different neurodivergent behaviours and thinking patterns.
  • Although masking can be a useful coping strategy, using the same coping strategy long term, could trigger fatigue and exhaustion which can lead to mental health difficulties. Awareness of the negative feelings that can be caused by internalising negative stigma, and practicing self-kindness and compassion can be important for young people.

Supporting your child during festive periods/celebrations

Routine and predictability:

  • Autistic children often thrive on routine and predictability. Try to maintain their regular schedule as much as possible during Eid celebrations.
  • If there are any changes to the routine, inform the child in advance and provide visual schedules or times to help them understand the upcoming events.

Sensory considerations:

  • Many autistic children are sensitive to sensory stimuli. Be mindful of loud noises, bright lights, and crowded spaces during celebrations.
  • Offer a quiet and calm space where the child can retreat if they become overwhelmed. Consider providing noise-cancelling headphones or sensory-friendly items.

Visual support:

  • Visual support such as social stories, visual schedules, and visual cues can be beneficial for autistic children. Use these tools to help them understand the sequence of events during Eid and what to expect.

Prepare for social interactions:

  • Social interactions can be challenging for some autistic children. Prepare them for meeting relatives or guests by using social stories or role-playing beforehand.
  • Allow the child to choose whether they want to participate in social activities or prefer some alone time.

Special diets and food preferences:

  • Consider any dietary restrictions or preferences the child may have. Some autistic children have specific food sensitives or preferences, so ensure that there are options available that they can enjoy.

Inclusive activities:

  • Plan activities that cater to a variety of interests and sensory preferences. This could include arts and crafts, storytelling, or other activities that allow the child to engage at their comfort level.

Communication strategies:

  • Be patient and use clear, simple language when communicating with the child. If the child uses alternative communication methods, ensure that those are respected and supported.

Family involvement:

  • Encourage family members to be understanding and supportive. Educate them about the child’s needs and preferences to create a more inclusive and comfortable environment.

Flexibility:

  • Be flexible and open to adjustments. If a particular aspect of the celebration is causing distress, consider modifying or skipping it to prioritise the child’s well-being.

Celebrate in familiar settings:

  • If possible, celebrate Eid in a familiar and comfortable environment for the child. This can help reduce anxiety and make the celebration more enjoyable for them.

Remember that each autistic child is unique, and the strategies that work for one may not work for another. It’s essential to observe and understand the child’s specific needs and preferences to create a positive and inclusive Eid celebration for everyone involved.

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