Day #352 – Late Diagnosis

Something interesting is happening in the Autism world.

Adult diagnosis.

I asked Erin to tell her story on Day 287.  Her story was remarkable to me then and it still is today.  What’s even more remarkable?  How many adults are just now being diagnosed as being on the spectrum.

Most of the time these adults are ‘mildly Autistic.’  What does that mean?  It means that others just thought they were well…quirky.  We’ve often thought about Tucker in this way.  20 years ago he wouldn’t have been identified…he would have probably been the naughty kid that couldn’t sit still (hellooooo…sensory seeking), the kid that was always touching others, and the kid who was simply socially awkward.

In other cases, these adults could have been misdiagnosed.  Current research is telling us that many of these folks were diagnosed with mental illness, depression, obssessive-compulsive disorder, multiple personality disorder, a variety of intellectual disabilities, and even schizophrenia.

So what does this have to do with Tucker?  Nothing and everything.

I’ve talked with some of these adults.  Adult that have attempted suicide..many times.  Adults that have spent their lives pretending to be someone other than who they are.  Adults who never felt ‘normal.’  Adults who were given cocktails of different medications to ‘cure’ their ills – even though there was never a combination that worked.  Adults that turned to illegal and illicit drugs to feel better or closer to normal.

It makes me so sad.  So very sad that these folks have spent their lives trying to make sense of a world that couldn’t be made sense of.  Trying to fit into a world that was forcing them to become something that they weren’t.  It wasn’t ever going to work.  Ever.

I just can’t imagine what that had to be like.  I imagine Tucker trying to live in this world without knowing he’s okay just the way he is. Living without knowing that autism is a part of him – and at times, it does define him – but he is not less.  He is so much more.

Then I’m so happy.  I’m so happy that Tucker was born in 2002.  I’m so happy that he was born in a time when people began to understand the true ‘spectrum’ of the spectrum. I’m so happy that no one prescribed him medications to ‘fix’ something that couldn’t be fixed.  I’m so happy that no one described him as something less.

He, for the most part, has been met with compassion and understanding.

How do these adults figure out that they may have autism?  Well some, of course, read about it on the internet.  Some seek help from mental health professionals.  Some find that their children or grandchildren are diagnosed and then they seek help – recognizing that they have some of the same traits. Even more recognize that they have autism, but never really seek an official diagnosis.  Why?  Because sometimes a diagnosis can do more harm than good (in their personal opinion).

Receiving a diagnosis can be both costly and time-consuming – and many people simply don’t have the time or money.  It’s irony at its best.  They may not have the time because they are busy trying to exist in a world in which they don’t fit.  Others may lack the funds because they have not pursued occupations that support the strengths of autism.

Another factor may be the emotional effect.  Dealing with the anger of living with this thing, the grief of losing a sense of ‘normalcy,’ or even denial.

On the other hand – adults can experience huge amounts of relief.  Finally, their struggles and troubles in life make sense.

Is this personal to me?  Yes.  In writing this blog I have become ‘online friends’ with a woman.  She knows who she is and she was diagnosed as an adult.  She shared with me her struggles throughout her life and let me tell you they are huge.  They are movie worthy.  Finally, she was diagnosed – and for once in her life, her life made sense.

So, whenever she posts pictures of her sensory toys, the overload she is experiencing with social situations, or just general thoughts I smile.  I smile every time.  Every. Single. Time.  Why?  In the short time I’ve known her you can sense that she can finally be at peace.

No matter how she got there or how long it took the important thing is that she finally got there and it’s so lovely.

It’s so lovely to find that peace – but even more when she’s been looking for it for so long.

Dearest friend – you know who you are and know that I am BEYOND proud of you and really can’t wait for the day when (if you allow) I can give you a nice, tight, sensory-fulfilling hug.


3 thoughts on “Day #352 – Late Diagnosis

  1. Thank you so much for writing this, Nikki!

    Yes, yes, YES…to all of the above. I’ve found that adult diagnosis is a mixed bag. It’s bouncing back and forth – grieving the loss of years of inorganic living while simultaneously realizing you weren’t broken after all, you were just wholly something else. Perfectly imperfect. Just like every other human being. It provides a sense of community (My autistic friends are beautiful and diverse, and they feel like family. They’re my tribe.) and it feels like home.

    I share very openly of myself. I do this for kids like Tucker, who might not have parents as accepting and encouraging as you. The kids who are expected to conform. Conformity hurts.

    I do it because there’s someone sitting behind a computer screen RIGHT NOW that is brilliant and wonderful and worthy of happiness, who is thinking of taking their own life because the world is so painful and loud and judgmental.

    I do it for society, so that they can see I bleed red and cry clear just like them. To show the world that different can be beautiful. Different can sometimes be BETTER.

    One day, when I have more energy, I’ll explain to you why, unlike many autistic adults, I actually like the puzzle piece symbol. I’m down a few spoons tonight. Need to recharge. 🙂

    Thank you for educating in kindness and love. The world needs more mommies like you. I’m glad Tucker has you. I’m glad we all have you! ❤


    • Yes, yes – so, so many times YES!!!! My heart just nearly bursts open every time you post something about your incredible journey. We can all learn so much from you…thank you for being you.


  2. Pingback: Day #327 – Indexing | 366 Days of Autism

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