So you've just been given an autism diagnosis - the first thing I want to say to you is welcome! Welcome to a wonderful community where you belong, and where you will be encouraged to be who you are!
Having said that, I understand that it can be an overwhelming experience when you get the 'official' confirmation that you have an autistic neuro-type.
The relief feels good (it all makes sense now!).... The validation is very powerful, allowing you to reflect on your life experiences through this new lens.
But a sense of grief often happens too. Frequently, the "what if story" surfaces, raising questions such as, "what if I had realised this earlier?…would my current mental health be better?...would my career have taken a different path?...would I feel like I belong and fit in?!!"…
Research suggests that identifying your autistic neuro-type earlier in life contributes to improved mental health.
But accepting this reality is tough.
Grief affects us differently. Grief can come from thinking about all of the time wasted, sadness about the life-long struggle to fit in, a sense of being misunderstood, a lack of support, and so on.
While validation of a ‘diagnosis’ (discovery!) is powerful, acknowledging and validating your entire life and identity can be tough. Here are some pointers that you might want to consider (in no particular order)…
Research
I’m sure you’re onto this, and has most likely become your latest SPIN (special interest)! But please make sure that you check out neuro-affirming resources to better understand your neurotype.
The main aim here is to explore your own key strengths and challenges while embracing your authentic self. There are too many myths about autism, and a lot of outdated info on the net.
So please be selective in what you read - verify the credibility of the sources you consult. Some websites may state that they are neuro-affirming, when they don’t quite understand the concept, or they don’t have lived experience of being neurodivergent themselves. There are many wonderful books, podcasts, and other resources out there!
Reflect
Again, I dare say that you’ve reflected on yourself your whole life, but consider targeting your navel gazing to recognising your key challenges and strengths. Work out with therapist or loved one on how to leverage your strengths and to address your specific needs.
What causes you the most stress? What support do you need? Do you now feel more able to justify having a cleaner and gardener, and to arrange a meal delivery service? (not that you should have to justify that, but I'm guessing it may give you some momentum).
Talk to your treating psychologist and psychiatrist about common mental health conditions for autistic people. Note that autistic neuro-types are more likely to have ADHD, OCD, anxiety, mood disorders, and so on. At the very least, you should be screened for ADHD, given the very high correlation with Autism.
(Looking for a qualified, experienced and actually autistic psychologist? Hi! You've found her.)
Consider asking your GP for a referral to see a psychiatrist if this is indicated (as well as your treating psychologist) if you haven't got one already. They don't just dispense medication, but can be a wonderful source of support, and connect you to a range of treatment options available.
See your GP in regards to your physical health too. Autistic individuals are more prone to many medical conditions, such as IBS, gastric reflux, PCOS, endometriosis, Ehler-Danlos Syndrome, migraine, syncope, vertigo, chronic fatigue syndrome, tinnitus, mouth ulcers, urinary incontinence, iron deficiency, and many others. It's important for professionals to be aware of so they can more readily detect and support these conditions as well. Some GPs really don’t know much about the likely co-occurring conditions, so please change GPs and find one who is knowledgeable.
Find Your Neurokin
Healing the trauma of years of disconnection from your authentic self starts with establishing safe relationships. You will start to thrive when you have people around you who understand your strengths and your struggles and support you in those without judgement.
Research indicates that Autistic individuals who feel connected to their Autistic community have improved self-esteem and wellbeing, and lower depression and anxiety scores. Now is a good time to find a neurodivergent community. There are many on-line groups on facebook and Reddit, as well as many on-line groups organised by people like myself. If there are relationships in your life that still don't heal after sharing your neurotype discovery, then move on and find some new connections - life is too short!
If you're on the dating scene, consider that research shows that being in a romantic relationship with another autistic person is often less stressful, and more fulfilling (since you don't need to mask).
Advocate for Your Needs
Be your own beautiful authentic self. But what does this actually look like?
Here is a list of a few of mine, as an example:
Let your loved ones know that you hate going to noisy restaurants
Leave earlier at social gatherings if you need to
Stay at home for Christmas or other events this year
Wear a headset, hat and sunnies at the shops
Stop people pleasing, and say ‘no’ more
Fidget and stim openly, when you feel safe to do so
Stop fake smiling, and be true to your feelings
Have more sensory downtime, and plan it into your day
Reduce contact with people in your life who are not supportive, or who are judgmental
Reflect on what you can outsource if possible (such as cleaning)
Play to your own strengths
If you’re not self-employed (which is pretty awesome!) work with management and support staff to advocate for what accommodations you need in the workplace. This might include flexible work hours and arrangements, different communication approaches, consideration to your sensory sensitives, and so on.
Talk to your union if they’re not playing ball. Reflect on your current job- does it play to your strengths? Do you need to look at a career change, or a sideways move?
Consider Sharing
Consider sharing your full report with close loved ones whom you trust. Or perhaps you could share a one page summary of what you would like others to know about you, or to tell them in your own time. Some family members and loved ones will want to know more and support you.
Be prepared that some loved ones might be dismissive, and say comments like: ‘you don’t seem autistic though’ and ‘we’re all a bit autistic’... I’ve had these comments a bit from family and friends, and it often occurs when you're late diagnosed. Be brave to challenge comments like these. Hopefully your loved ones are supportive and want to know more.
Practical Stuff
If appropriate, consider applying for funding or practical support via the NDIS, and/or Centrelink. Check out other practical support available
Find out when the low sensory times are at your local shops, movies, etc.
Try various sensory tools, fidget toys, and so on- there are so many wonderful tools out there!
Consider seeing a psychiatrist if a medication trial may be warranted to help anxiety and mood (if that’s an issue for you)
Work on your sleep hygiene, and consider getting your sleep checked out, or at least talking with your GP. Did you know that up to 80% of autistic people will have a sleep disorder in their life time? We also have less REM sleep, more parasomnias, more sleep disruptions, circadian rhythm issues, and so on.
Consider getting an Occupational Therapist to do a Functional Capacity Assessment. This will help to pinpoint your specific needs. If this is too expensive, work closely with someone to gain an understanding of the key areas of support needed.
Therapy Focus
Therapy is varied depending on your goals and needs. Key topics that people who are newly discovered (see how I hate using the term ‘diagnosed’!) include:
How to unmask when safe to do so
Identity work- who am I really?
Processing traumas
Understanding and working with sensory issues
Executive dysfunction and task switching issues
Setting healthy boundaries
Working on relationships
And so on.
Congratulations and welcome to our community! I hope you’ll be proud to be autistic at some stage in the future. There are so many things about you to be proud of.
I hope this blog has been helpful for you.
Amy
You are amazing Amy :)