Navigating Life After an Autism/ADHD Diagnosis

So you've received a diagnosis of Autism and/or ADHD. It might have confirmed everything you knew. It might leave you with questions. Honestly? It might do both.

But then follows the "What now?" moment, and wondering what exactly to do with the results.  I am SO glad that you landed up here. So voila, here's a little roadmap for you wonderful people, designed to hold your hand through the first month. I've been there both as an adult receiving my own diagnosis, a parent receiving a diagnosis for my child, and as an Autism/ADHD assessor giving out that diagnosis to other families.

Before You Begin

A diagnosis doesn't change who you are fundamentally. It does change what you know about yourself, or your child, and gives language to that. It changes how you understand how your brain works, and guides you to building support that fits.

I've written this checklist as a ROUGH guide to going forward. Please know you are welcome to tailor this to suit the way you work with best. Feel free to progress linearly, or jump around stages as needed. Stage 1: Processing the Diagnosis Read the report Your report should provide you with a story that helps you understand the diagnosis, and why it was made. Do highlight parts that explain strengths, communication style, profile and support needs, as you will likely need to come back to this.

Feel free to make a copy and annotate one. Ask questions. In the first stage, this is an ideal time to ask your practitioner for clarification, or to correct any mistakes that were incorrectly reported that are of significance.

Process emotions

Feel free to book in with a trusted therapist, a parenting partner, or engage a friend for a walk and talk or a coffee date. Prefer to do it solo? Journal or dance or craft it out. This is a big moment in your life and it's a lovely reminder to pause to process. Stage 2: Share The Diagnosis When sharing the diagnosis, it is crucial to reflect on who you feel safe to share this with. Are you comfortable having this on medical records? Who are safe people to trust with this? How will the information be stored? These are important questions to ask of your care providers. If you do feel safe to, share the report with those in your care team. Do note that your assessor may provide different reports (e.g. summary vs full length) in order to keep your confidentiality of disclosed histories to those who may not need to know all the details. Providing reports can help with proof of official diagnosis and help allied health team members understand you or your child more easily through reading the report, reducing the burden on families to share details. For parents who have discovered their child's neurotype, it is important to share the details in a child-friendly way with them so as to involve them in understanding. I've written a step-by-step guide on How To Share An Autism or ADHD diagnosis with your child that I've linked. Alternatively, Neurowild or Liz Angoff also have excellent resources in this area.

You may also enjoy reading to them, and here is a short list of books curated. Personally, I've found that going through several books can deepen their understanding and provide different perspectives, revisiting the information in different ways. Stage 3: What Can I Do With A Diagnosis? NDIS

You or your child may meet criteria for NDIS support.

• Call NDIS or submit the Access Request Form. Go here for more information.

• Attach the diagnostic report and any supporting evidence.

• It is often helpful to attach statements of impact of disability. This means reflecting on how disability truly impacts your everyday life and the amount of support required to maintain , which is where Stage 1 is helpful to have processed your emotions around it.
  

Whilst ADHD is not eligible for NDIS currently, if your child qualifies under the early intervention stream, they may be eligible. Medicare

ADHD is eligible for support under Medicare's Better Access to Mental Health, where you may get up to 10 Medicare-rebated therapy sessions with an eligible provider. Autism gets up to 20 additional Medicare-rebated sessions across the time period until they are 25, and this will need to be released by a paediatrician or psychiatrist. Centrelink Under Centrelink, you can investigate Carer's Payment and Carer's Allowance, which is an additional payment for those who care for someone with a disability to provide some financial support. General

A diagnosis will offer you formal protections under the Disability Discrimination Act (1995). You may wish to advocate for accommodations under it to provide space for your disability and how you work. Stage 4: Moving forward Reflect on who is currently in your care team. Who would be helpful to add as an everyday support within financial means? Often, pre-diagnosis families may find themselves playing dual role of trying to be therapist as well as parent. The below is a summary list of a few types of allied health professionals who can be helpful to engage with. You may find that your local professional may offer so much more, where some of these roles may overlap due to their expertise in working in multi-disciplinary teams and their own professional development pathways. Speech Pathologist: can help with stuttering, pragmatic language development, articulation, understanding social contexts.

Occupational Therapist: can help with understanding sensory processing, fine and gross motor development, interoception and support with Activities of Daily Living (everything from play, cooking, friendships, occupational support, exercise etc). Psychologist: can help with understanding emotional regulation, discovering roots of big feelings, developing strategies to move through it, processing trauma, working through social conflict and self-identity/self-esteem work. You may also wish to explore other modalities that may be more appropriate to your situation that are aligned to your individual needs and inclinations. Art therapy, Play therapy, animal-assisted therapy, music therapy, gaming therapy, nutritionists and dietitians, social workers, support workers.... all of these are valuable professions that add to the rich tapestry of supports available. Do call around and ask, and put yourself on waitlists. If local therapists are limited, consider telehealth as an option to broaden the scope. When making space for therapies, do also make space to simply let.... be. Where is the space in the schedule for joy and connection? To deep dive into their interests? We are more than just our support needs. We are hope and love and laughter, and these are essential elements that must not be forgotten. Stage 5: Lifelong learning So the stage is set. This is a journey of uncovering, that doesn't quite have an end point.

My best advice? Is stay curious and connected. Curiosity changes everything. Every behaviour — even the ones that confuse you, worry you, frustrate you — has a story, a job that it does for the nervous system.

And when you stay curious, you start asking questions that open doors instead of shutting them:

• What is this behaviour trying to tell me?

• What does my child need in this moment?

• What has this behaviour been doing to help them — or me — cope?

• What stress, expectation, or sensory demand is this behaviour responding to?
  

If you're a parent who would like a step by step explanation of what the neurotype means, guided by both lived and clinical experience, I warmly invite you to check out my parenting courses Raising your Autistic Child Authentically and Raising an ADHDer, which invite you into a community group for 12 months and monthly Zoom calls too, on top of guided, recorded information and practical strategies for each issue. If you're an adult who wants to learn more about their Autistic identity, I'd highly recommend exploring this Welcome Pack done in partnership with Griffith University, Reframing Autism and Aspect. Alternatively, Autistic Self-Advocacy Network has developed a handbook called Welcome to the Autistic Community, and has different versions for adolescents and adults.

Connect.

Connect with members who are going through a similar journey, because more than anything, I wish to tell you that you are not alone.

Somewhere, on the next street or suburb or school, someone is going through this too. Social media and podcasts have been incredibly helpful for many to truly allow their nervous system to feel this. Simply type in "ADHD support" or "Autism in Women" or "Parenting Neurodivergent Children" into Facebook and see what crops up. I have found utility in typing in location-specific specifiers, such as "Australian Autistic Women" or "Melbourne ADHD Women and Gender Diverse Folk". Find adults who have been on this journey for a while and have taken steps to unpack that inner ableism. Find people who understand what neurodiversity-affirming means, and can share in that with you. I hope this little guide has helped make sense of what could be a bumpy ride. But like this guide, that diagnosis, that name, is a map. It is language, direction, a pathway to support, both for the road ahead and for the person inside that is begging to be seen and loved as they are. Know that person. Honour it. It is okay to seek support for the things that are hard, and we can do that whilst celebrating the self too. Sending you the kindest of thoughts at this stage in your journey.

Warmest,

Sandhya Menon