Before and after diagnosis: what support is available?

Receiving an autism diagnosis can be a life changing event. It can bring clarity but also raise many questions and concerns. Understanding the different types of support available both before and after a diagnosis can make a world of difference in navigating this often-overwhelming process.

In this blog we will explore the support systems you can tap into during both phases of an autism diagnosis.

Before diagnosis: prep for clarity

The time period before receiving a diagnosis can be full of uncertainty. Individuals and families may experience signs and symptoms without knowing their cause, leading to anxiety, frustration, and confusion. This doesn’t have to be the case, and there are ways through this. The key is knowing where to turn for support while undergoing assessments or waiting for answers.

1. Primary care providers

Your general practitioner (GP) or primary care physician, paediatrician or your child’s school’s special educational needs co-ordinator (SENCo) is your first line of support. They help monitor symptoms, order initial tests, and refer you to appropriate specialists. Regular check-ins with these professionals ensure you’re receiving professional guidance throughout the diagnostic process. For information around the diagnostic process, including the roles of key professionals, head over to our Resource Hub which has loads of helpful factsheets.

2. Mental health support

The time before a diagnosis can be emotionally taxing. Seeking mental health support during this time whether from a therapist, counsellor, or support group can help an individual and their family process emotions and reduce anxiety. Many people find it useful to speak with someone trained to help them cope with uncertainty.

3. Online Communities and Forums

While searching for answers, online communities can provide a sense of connection. There are many forums and social media groups where people share their experiences, and stories. These spaces can provide insight into what to expect, though it’s important to consult a healthcare professional for medical advice. Within our Early Years’ service, we offer 45-minute parent group sessions where parents are supported by our experienced interdisciplinary team, to empower them to build skills, knowledge and confidence.

4. Family and friends

Sharing your concerns with loved ones can be incredibly beneficial. Even if they cannot fully understand what you’re going through, having a support network of people who listen and offer comfort can ease the burden of not knowing what the future may hold. Our free introduction to autism online training course can provide family and friends with a fantastic overview of autism to help them understand what you’re going through.

5. Advocacy groups

Seeking out advocacy organisations that offer resources to people seeking information can be a useful tool. BeyondAutism offer various platforms including an autism service directory whereby families can enter their postcode, and access resources and services available in your area, to guide you through the pre-diagnosis phase.

Making sure you have as many people in your network is so important throughout the process. This means you have more people to lean on for support or for advice.

After diagnosis: navigating the path ahead

Receiving a diagnosis, whether expected or unexpected, can bring a sense of relief, shock, or even a sense of loss. Once you have confirmation of the diagnosis, there are many avenues of support to help the individual and family move forward.

1. Specialist care

After diagnosis, you may be referred to specialists who focus on your specific diagnosis. This could include speech and language therapy or occupational therapy. Understanding your options and planning for next steps is crucial to collaboratively supporting the individual. Take a look at our roles of professionals factsheet for a breakdown of different support.

2. Educational resources

Understanding the individual’s diagnosis is key to supporting effectively and implementing useful strategies to teach skills. Many early intervention hubs, hospitals, clinics, and advocacy organisations offer pamphlets, websites, and webinars to help understand the diagnosis further. Your healthcare provider is likely to provide appropriate materials, but don’t hesitate to do your own research; just be sure to rely on reputable sources.

3. Support groups

Support groups, whether in person or online, provide a safe space to share your experiences with others going through similar situations. These groups offer both emotional support and practical advice, helping you feel less isolated. You can learn coping strategies, tips, and lifestyle adjustments from people who understand your journey. Search the BeyondAutism services directory to see what’s available in your area.

4. Counselling and therapy

Coping with a diagnosis can be emotionally challenging. Therapy can help families process feelings of anger, sadness, or fear that may arise. Acceptance and commitment therapy (ACT), mindfulness-based therapy, and other forms of counselling can be highly effective in helping individuals and families adapt to life post-diagnosis.

5. Workplace accommodations

If a diagnosis affects an individual’s ability to work, there may be entitlement to workplace accommodations under laws such as Equality Act (2010). This can include flexible working schedules, modified tasks, or assistive technology. Contacting the HR department or disability services at the workplace can provide a clear path for how to maintain a fulfilling career.

Support is a lifeline

Whether you’re still searching for answers or learning to live with a new diagnosis, it’s essential to know that you don’t have to go through it alone. There are many resources, professionals, and communities ready to offer support every step of the way. Proactively seeking help, educating yourself, and connecting with others are vital to managing health and wellbeing before and after diagnosis. With the right support, the path ahead becomes less daunting and more positive.

To find out more about the support available, watch our Lunch and Learn on the topic below. Or if you have any questions and would like to speak to a BeyondAutism expert, call us on 020 3031 9705 or email info@beyondautism.org.uk.

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