Disclaimer: In this blogpost we have utilised identify-first language in line with current preferences in the Autistic community. However, we acknowledge that everyone is on their own journey, and they have the right to choose if they prefer person-first language.
Receiving a diagnosis of Autism Spectrum Disorder (ASD) can bring on a whole wave of emotions for parents or caregivers. Surprise, overwhelm or perhaps uncertainty. These feelings are only natural.
Most often, parents and caregivers worry about the negative connotations that can come with having a “label” of ASD. When in fact, the autistic community emphasise how liberating it is to connect with others who share similar experiences and strengths.
Additionally, an ASD diagnosis can offer newfound understanding and clarity regarding behaviours that might have previously been perceived as challenging or confusing. This understanding can be pivotal in guiding the path towards appropriate support and intervention strategies.
In this blog post, we will delve into tips and strategies to provide support for parents and caregivers as they navigate the stage of receiving an ASD diagnosis in their child.
Autism Spectrum Disorder
Autism Spectrum Disorder (ASD) is not an illness or disease, nor is it something that can be fixed. ASD is a neurodevelopmental condition that affects how someone thinks, feels and sees the world around them. It is characterised by difficulties in communication, social skills and repetitive behaviours. It is called a spectrum, as every autistic individual has different strengths, goals and specific support needs.
Occupational Therapy and Autism Spectrum Disorder
Occupational therapy plays a crucial role in supporting children to engage in meaningful everyday activities that are important to them. Occupational therapists adopt a person-centered and strengths-based approach, aiming to promote participation and empowerment. They work on developing essential skills that enable children to become more independent in everyday activities, including self-care, productivity and leisure occupations.
In the home environment, occupational therapists help children with the specific life skills they need or want to improve. This might involve providing support with self-care routines, organising homework, or providing strategies to improve emotional regulation skills.
Occupational therapy extends its support to school and the community by adapting the child’s environment to best meet their needs. This may include recommending supportive seating at school, setting up a calm space, or providing sensory equipment to manage sensory overload during community outings.
It’s important to emphasise that every child, regardless of their diagnosis, has unique abilities, interests, and values. ASD is one of the many neurological conditions that are a natural part of the human experience. Rather than stigmatising it, it should be recognized and celebrated.
When seeking an occupational therapy practice or any other healthcare service, it’s crucial to find a service that shares our commitment to embracing neurodiversity, just like we do at Occupational Therapy Helping Children. Neuro-affirming practices highly value and respect the inherent neurological diversity of all individuals, and reject the idea of trying to “fix” or conform to social norms. Neuro-affirming therapists prioritise teaching self-advocacy skills to their clients while also empowering parents and caregivers to advocate for their children in a society that might not always accommodate neurodivergence.
To read more on neurodiversity, check out our other blog on Neurodiversity.
Receiving a Diagnosis
Receiving a diagnosis can be overwhelming for parents and caregivers, and some may view it as simply getting a label. However, it’s important to know that a diagnosis can bring a deeper understanding of their child’s needs and open access to valuable therapy support and services. Various countries and states provide different forms of support. Therefore, it is essential to explore the local community resources available. For instance, in NSW Australia, the support may include:
- Helping Children with Autism (HCWA) Package: For children under the age of 7, there’s a Medicare rebate available through the Helping Children With Autism (HCWA) package for early intervention services.
- National Disability Insurance Scheme (NDIS): The NDIS offers individualised funding packages for individuals with a disability caused by a permanent impairment, including ASD. Funding packages can be used to support the specific needs and goals of the child, offering access to various therapies, programs and other necessary support services.
- School Learning Support Program (SLSP): The SLSP is a funding initiative provided by the NSW Department of Education to support students with a disability or learning difficulties in mainstream government schools. The specific funding and support available will vary for each child based on individual circumstances. Funding may be allocated for a student liaison support officer (SLSO) to provide support in the classroom and/or playground if the child is eligible.
- Carer Allowance: The Australian Government provides Carer Allowance to individuals who offer daily care and support to a child with a disability or medical condition, including ASD. Registration can be done through Centrelink on the MyGov website.
- Local Community Health Centre: There are supports available through the public health system in NSW. Contact your local community health centre to enquire about supports and waitlists.
Beyond financial support, receiving a diagnosis can provide a deeper understanding of their child’s perspective and how they experience the world. It can also serve as a valuable tool to inform other important people in their child’s life, such as family members, friends, teachers, and healthcare professionals. This shared understanding can lead to better support and care for the child.
Steps Following a Diagnosis
After receiving a diagnosis in their child, parents and caregivers may find it challenging not to feel overwhelmed. Here are some helpful recommendations to organise supports:
- Take Baby Steps: Avoid information overload. Assessment reports can be lengthy, so take your time to process and read through the assessment results and recommendations.
- Contact Local Support Services: Reach out to local support services and get on their waitlist if they offer neuro-affirming services. These support services may include occupational therapy, speech therapy, physiotherapy, or psychology.
- Seek Support from Family and Friends: Remember, you are not alone on this journey. Reach out for support from family and friends. Many other parents are also navigating the early stages of a diagnosis.
- Sharing the Diagnosis: Parents and caregivers often wonder who they should share the diagnosis with and when to tell their child. It’s entirely up to them, and there is no right or wrong answer. However, it can be empowering for autistic individuals to have a better understanding of themselves and connect with others with similar experiences. It’s crucial to inform the child’s health care professional team, as they can help navigate stressors and barriers to accessing and maintaining support and services for the child.
Support for Parents and Caregivers
There are excellent support groups and resources available for parents and caregivers. While the internet offers a lot of information, it’s essential to recognise that every autistic child experiences the world differently, so not all information may be relevant. Accessing neuroaffirming resources that focus on understanding and embracing neurodiversity is crucial. Here are some helpful neuroaffirming resources:
- Raising Children Network: This Australian government-supported website (https://raisingchildren.net.au/autism) provides evidence-based information and resources for parents and caregivers. It covers various topics, from diagnosis and early intervention to school and family life.
- Autism Spectrum Australia (Aspect) Helpline: Aspect offers a helpline (Phone: 1800 277 328) for parents seeking information, advice, and support related to autism. The helpline operates Monday to Friday, 9:00 am to 4:30 pm AEST.
- Local Autism Support Groups: Many local communities in Australia have support groups for parents and families. These groups offer a safe space for sharing experiences and connecting with others who understand the challenges and joys of raising an autistic child.
- Podcasts and books: There are various podcasts and books, written specifically for parents of autistic children, offering insights, guidance and strategies to support their child’s development and well-being. Check out five recommended podcasts for parents here Podcasts for Parents.
- Respite care: Respite care services can provide parents with temporary relief and a chance to recharge while knowing their child is in capable hands. Respite care can be accessed through various government and non-government organisations. Talk to your child’s health care professional to find out more information.
Parenting a child diagnosed with ASD can be both rewarding and challenging. It’s crucial for parents and carers to reach out for help and look after themselves to avoid burnout.
Additional Services:
- Parent Line: Dial 1300 1300 52 for a free telephone counseling and support service for parents and carers with children aged 0-18 in NSW.
- Disability Gateway: Call 1800 643 787 for information and services for people with disabilities, their families, and carers.
- Carer Gateway: Contact 1800 422 737 to access supports and services for carers.
- Mental Health Access Line: For support and information regarding mental health questions and concerns for children, teens, and adults, call 1800 011 511.
Occupational Therapy is one of many support services that can provide the child and their family with strategies to reach their unique potential and enable them to live a meaningful life. Check out our other blogs on The Role of an Occupational Therapist in Autism Spectrum Disorder and Girls with Autism Spectrum Disorder.
If you would like to learn more about how we can help your child, please call us on 9913 3823 or email hello@occupationaltherapy.com.au.
