Newly diagnosed Autistic Adults

Comments on forum are a strong argument for adult diagnosis of autism.

I was so deeply moved just moments ago.
I have a routine of checking in with each of the four on line autism forums I attend every morning.
One person had written that she was newly diagnosed and that she wondered what other people’s reactions to diagnosis had been.

People began to check in and tell their stories.
Some said they were initially shocked because they had no idea.
Others said they felt deep loss for things that might have been.
Some said they felt angry that they had spent their whole lives not knowing why they were different.
Some said they refused to accept diagnosis and fought it to begin with, but eventually became convinced the diagnosis was correct, and accepted it.

Every person (and more checking in as the morning unfolds – it is 5:30 AM as I type this) said that they felt relief because they finally understood they were not bad, wrong, morally inferior, weak willed, crazy, broken, hateful, spiteful, mean, cold, or any of the other labels they were given all the years they did not know and understand about their autism. Diagnosis explained so much!

Each person said it was a relief to have the answers to why life had seemed so difficult for them in so many ways.

Each person said it made so much difference in how they felt about themselves, how they saw their past struggles, and how diagnosis helped them make a new life with fewer struggles since knowing about their autism.

That parallels my own experience and speaks volumes about the tremendous need for finding lost autistic adults and giving them the tools they need to live better lives through gaining and understanding their own diagnosis.

I learned something from an article on autism and ageing the other day.
I had not thought of it before in this way.
This requires the assumption that autism has always been with us, rather than thinking it is an epidemic or sudden plague that appeared out of the blue in the middle of last century when it was first suspected and began to be explored.
Stick with me here.
If there are approximately 2 percent of every generation who are autistic, and autism has been missed as a diagnosis in adults ( childhood being measured from birth to the age limit of 20 years old), and there are currently ( as stated in the statistics I read) 5,500 autistic (diagnosed) people turning 20 years old every year here in the USA:
think about the 5,500 autistic adults in every generation each year who missed diagnosis simply because it was not done before 1980, and until very recently diagnosis was very rare.
People of the baby boom generation will have had more autistic people because there were more people born in that generation…
Half the baby boom population has retired, the other half is in progress of ‘coming of retirement age’. Using those same statistics, can we generalize that there are approximately 5,500 undiagnosed adults with autism reaching retirement age each year? How many are in the ‘over 65’ age category?

There are approximately 275,000 (between the age of 20 and 70) undiagnosed autistic adults in the USA alone. Of course this is only an estimate. Nobody knows, because that population is currently hidden. Actual statistics( I have looked at so many studies) estimate autism in all populations occurs at a rate of between 1 and 5 percent. I have assumed a conservative 2 percent for this discussion.

The relief of suffering in knowing yourself to be diagnosed with autism could reach and help so many people. We need professionals to diagnose, study, treat, provide therapies, care for, and otherwise support this group.

I hope that together we can raise awareness of this need and that we will soon see services provided for these truly lost and struggling generations.

OK, this is corny, but you will understand.

“I once was lost but now I am found”.
It has made all the difference to me. I hope others can be ‘found’ too.

The importance of diagnosis

Knowing I am autistic has been the greatest and most useful information I have ever discovered.

I want to repeat once again an explanation of the purpose of this blog.

Recently I have been getting a lot of emails with apologies for my childhood pain and angst, for my sufferings and my struggles, and all are so sorry I went through that.

I feel I have failed if the only thing I have done us stir your sympathy/empathy for pains long past.
The point of telling these things is not to obtain sympathy or to lament “poor me”, but to illustrate how autism and my lack of understanding, and the lack of knowledge of autism in those around me all contributed to the struggles we had then.

I am trying to point out the dynamics at work in an ‘autism blind’ world.

I am trying to point out things that may work to help understanding and communication as persons interacting, whether autistic or neurotypical.

The point is, that nobody then knew what we know as I type this.

Autism was at work in our interactions and none of us knew what was wrong, or how to do things any better.

Now I know and understand that I am autistic, I can see clearly how so many things happened and why.

Now I know about autism I can figure out so much of what had confused me for most of my life.

My writing here is not about the suffering and struggles, as much more it is about learning what caused them, and how they can be averted for those who are having trouble in the world today.

Older autistic persons such as myself, who went through life without ever hearing about autism are likely still living every day with a sense of confusion, frustration, self doubt and blame, anger issues and a deep sense of being a failure.

Those were the lessons taught to us by society at large and our lives being lived without the insights and understanding, and especially the self forgiveness that comes when we understand that we are not personally to blame. Autism diagnosis changes everything!

Autism diagnosis can open doors and shed light on thinking that casts a shadow first upon oneself for being ‘bad’, ‘mean’, ‘coldhearted’, ‘selfish’, ‘thoughtless’, lazy, and so many more labels we were given because nobody knew about autism and how autism changes perceptions, understanding, behavior and above all human interactions. Nobody knew!

Knowing about my autism is the best thing that could have happened to me. It has allowed me to understand so much of my past and see the dynamics that were not obvious before.
Diagnosis has given me self understanding. I had no idea of the way my thought and sensory processes differed so greatly from others. I never understood why I failed at so much that seemed so easy for everybody else. I never understood that it was not my fault. Why was I such a miserable failure?? Nobody knew!

Diagnosis has allowed me to forgive myself for being less than perfect, although I truly tried all those years to do my best, my sense of failure in any social context was overwhelming. Nobody knew!

Diagnosis has allowed me to see in light of learning about autism, how all the others I interacted with did not know or understand either.

I have been able to forgive the past and am now free to work on my deepened understanding of myself and others.

For the first time I am able to know myself and understand how my own thought processes, and indeed all the sensory processes that make up ‘who I am ‘ define me. Self understanding has brought much deeper understanding to my interactions with others as well. Diagnosis and the subsequent self understanding has been a tremendously interesting and satisfying experience, I am so uplifted in spirits and feel encouraged. With the understanding of autism I have the tools to learn and grow in so many new ways, and the insight into my autism makes it possible to see things with much deeper understanding and allows me to explore so many new options for my life.

I hope that all older people who are autistic can find the same freedom and insight that has come with my knowing and understanding autism, in myself, in my interactions with others, and in my life of the past and especially my life as I am now learning to live it.

The purpose of this blog is not to arouse sympathy, but to make people aware of the desperate need to reach older autistic people and with proper diagnosis help make the world they live in more negotiable, more understandable, less hostile, and provide good working insights and tools to use to live life free of self blame, doubt, and so much misunderstanding.

Diagnosis is healing.

Diagnosis is the key to self understanding.

Diagnosis is a catalyst to personal growth.

Diagnosis is an answer to all of those questions of ‘why’ that torment and had, until diagnosis, been unanswerable.

There are thousands of us in the USA alone. ( undiagnosed elderly autistic people) I hope to help by raising awareness that we are here, autistic, most of us in these elder generations simply not knowing, and so much help can be accessed, so much understanding and forgiveness made possible, so much healing and inner peace finally available by diagnosis of our autism.