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.

I speak for myself

I do not claim to represent autism as it affects anybody else. No organizations or other entities speak for me, either.

Recent discussion on one of the forums I belong to surrounded self diagnosis and included some very resentful comments about self diagnosed autistic people purporting to represent autism or to speak for autistic others. How dare a self diagnosed person claim to represent autism! How dare they claim to speak for other autistic folks!

I am not sure exactly how the commenting person defines other persons’ “claims” to being a speaker or self representation of autism.
I am not sure of many things in the resentment and anger displayed by this commenting person and some others in the discussion.
The comments created a very long discussion thread regarding self diagnosis, personal claims of being autistic, and defining what is meant by ‘speaking for autism’ ( autistic people).
It is all still very unclear to me, but it was very disturbing to me on many levels, and I want to post this ‘disclaimer’ right here, right now.
I only speak for myself and my own experiences with autism.
We are each individuals with individual experiences and each experience will be different, as will the conclusions drawn from any of them. I think that is probably pretty obvious and an accepted fact, NT, ND, diagnosed, self diagnosed, or not.

Please understand, even though my search for “Official ” diagnosis has been chronicled here and I have tried to share my personal experiences and the things I believe I have learned about autism, I am speaking only from my ‘first person singular” experiences and in no way purport to represent autism in general or to make finite statements about autism in any way.

I started this blog so that people who are just learning about autism in elderly people would have a source of information in one place available to begin with. I have simply complied the things I believe I have learned about my own autism and autism in general and attempted to share it. Others may/ almost certainly will have a different experience of autism, self diagnosis and attempts to gain ‘official’ diagnosis. Each of us being individuals, that will probably vary greatly.
In no way do I claim to represent anybody but myself and my own experiences as autistic, from not knowing about autism, to discovery of autism, my learning that I am autistic through self discovery, and up to and including the present, through my hunt to find a competent person to provide diagnostic help, and my present “official ” diagnosis.
I have repeated throughout this blog that each person’s experience will be different and that each trait described and discovered can be present in myriad varying ways. Defining autism is still “in the works” in medicine and science, and in society, and will continue to be refined by new facts being learned and the information being applied.

I encourage you to explore autism, learn as much as you can, and make your own informed decisions.
I support self diagnosis because getting an informed diagnosis in the USA in most places is so difficult. “official diagnosis” can also be very mistaken if outdated information is used or information gained through ” professional testing” is misinterpreted.
There are multiple valid reasons for self diagnosis. Nobody knows you better than you know yourself!
Do your homework, take online tests, read blogs, join discussion forums, and realize you are your own best advocate.
I can only relate my personal experiences, ideas, thoughts and feelings, which is what you see here. I only represent myself. Your experiences and insights will most likely vary.

Autism “coming out”

Revealing your autism to others?

Some people decide to keep their autism secret, not even telling their families.
Many decide to reveal to only a few selected others.
Others decide to ‘go public’ and live openly as autistic.

Decision to make your autism public or not is difficult due to social stigma and known incidents of discrimination once that autism has been revealed. There is no taking the announcement back, ” just kidding, really, I’m not autistic at all! “
Once the reveal is done, you may find events are not unfolding as expected. People take your announcement in many different ways.

Revealing your autistic identity to your spouse or siblings or parents, or your best friend might seem like a relief, but many times your request for discretion or secrecy will not matter… once the fact is out of the box, it is news, and news travels, even among loved ones with the best intentions.

Our daughter has disabilities, and we have always been open with her about them, and have shared information about them to anybody who is interested. We see this as educating the public and making the” unknown scary ” medical/neurological disabilities as normal to discuss as cancer, epilepsy, diabetes, or other once taboo subjects now known and understood by most people.
I feel the same about my autism and use any discussion or interest to be an advocate for autistic folks whenever possible, whether pointing out false ideas, explaining the experience of being autistic, or talking about lack of support, etc etc. I look for opportunities to be an advocate.
Autism: It is a known neurological condition, and yes it does affect a person through their life span. I have nothing to gain through hiding as though I were ashamed.
(Some professionals may fear losing status or credibility if they reveal their autism, I understand why they choose to remain silent, the stigma is real!)

The decision to remain silent or to reveal autism’s presence is a personal one, and I respect that. If somebody reveals their autism to you, please ask if they are openly discussing the fact, or if it should be held in confidence and not to be discussed with others. Then honor the request!

I want to point out that if you reveal your autism, you may not get the responses you expect or hope for.
Your autism is personal and for most of us, newly diagnosed and unsuspecting at this old age, the discovery of our autism is profound. Not everybody will see the significance of that, nor will others see your autism the way you see it. Don’t be surprised if you get condolences… people are recognizing your struggles and trying to be sympathetic with that. Don’t be surprised if they say “No you’re not” thinking that they do not match their own ideas of what autism “is”. You can ask if they want deeper explanation and information but most will refuse, telling you that it is impossible and to never mind, “I love you just the way you are”.

Very few people will be as interested as you are in your self discovery.
For you it is amazing and engrossing… and very personal.
For others, it is a bunch of facts that don’t make any difference to them (personally) except in a peripheral way. Most people, even if they care deeply for you, will not understand the changes you are going through as a result of your new self understanding. They want everything the same, and don’t want to have to learn new ways as well, or to be inconvenienced by new routines, accommodations, new ‘house rules’ or other adjustments you may want to make in your life. They want the same old you and in the same old way. That is human nature. Please be patient!

Don’t be surprised if others “don’t get it”.

It is taking a lot of time and trouble to sort out all of the new and interesting things you are learning, and since they are not interested, they will be reluctant to spend the time and effort to understand as well as you do.

I will repeat that this is human nature, and not an indication of lack of caring. It is simply more personal and therefore a ‘bigger deal’ to you than to anybody else.

I have made autism one of my passionate interests and I am currently studying it for hours online and in books.
Autism has become a “special interest”.
When talking about your autism, you may recognize that same glazed look, anxiety to escape, barely polite behavior that others get when you talk to much about your other favorite subjects.
( ask me how I know! )

Autism is simply not as interesting to some people as it is to us.

Finally a diagnosis!

Why is diagnosis important?

In conversation on a forum today we discussed the difference our lives before and after

I said “learning about your autism is like reading your own biography but with the lights turned on instead of trying to see and understand the pages in the dark. ” I was so pleased with that analogy I thought I would share it here.

Autism Statistics

Not good news

I began to gather statistics regarding autism a while ago. Sources and quotes seemed to vary widely but soon I realized that until quite recently there have only been a few studies regarding autistic struggles, and that most of the statistics quoted before 2015 or so were more likely to be using old information and only pertaining to young people or children. Statistics quoted here are still canted toward younger populations. Many autistic adults never reach the age of 60.

I have multiple sources for all the statistics quoted here, and when there have been drastic differences in the numbers reported, I have attempted to understand why and attempted to figure out which was most correct.

I have attempted to find actual studies instead of just quoting somebody else’s quotes from a lecture, blog, presentation, book, or article in print.
I believe that due to the hidden factor of the lost generation of older adults without diagnosis, the statistics are still probably skewed.

As our understanding of autism grows, so will the precision behind collected statistics.

Consider this at best, an “educated guess” using information available on the internet and in multiple recent reference books.
Reports and study results are accruing, these numbers are definitely not static.

Considering that these statistics are probably under reported, they are staggering in the implications. Something to think about. What can we do to lessen the impact of autism on those who must live with it?

It is perhaps easy for those of us ( autistic folk) who live independent lives close to the mainstream, who speak and write easily, who have a support system and access to accommodations to say , ” I do not have a disability, I simply have a different operating system”. Lucky us! We are in the very small minority of autistic folk so “gifted”.

These statistics give the lie to those who trumpet autism as a gift and who would become angry over people who search to find ways to alleviate the suffering and dangers that their dis-similarly
“gifted” autistic brothers and sisters deal with every day.

Consider these statistics:

Autism as it is understood today will affect between one and two people out of a hundred. –

35 percent of those with autism will have intellectual impairment

40 percent of those with autism have epilepsy or other forms of seizures

The average age of death for an autistic person without intellectual impairment is 54 years. Leading cause of death is heart disease, followed by suicide and seizures.
Suicide risk is 9 times that of the neuro-typical population, and risk of suicide is higher among women.

The average age of death of those with intellectual impairment is 39.5 years .

Factors in these terrible statistics seem to be worse overall health and likely complications of co- morbid health issues, poorer health care and poor self reporting of health issues due to impaired communication abilities. Higher incidence of seizures also is reported to be a contributing factor.

Children with autism are 40 times as likely as their neurotypical peers to die of injury before their 7th birthday. Most common deaths in this autistic age group are drowning, and suffocation.

Up to 40 percent of autistic people are non verbal, another 20 percent struggle with speech. This means + /- 60 percent of autistic folk have very strong impairments in every day ability to speak.

Add this to the wakening awareness that there is a high percentage of autistic people in jail. 30 percent of jail populations are reported to have intellectual disabilities.

( this covers all forms of intellectual disabilities, not just those who might be autistic) There is a very recent movement to try to uncover hidden autism in incarcerated populations. I applaud this work and hope to learn more as information becomes available.

I will sum this information up by saying that I believe the statistics being gathered today will be more accurate and those of tomorrow, hopefully even more so.

The reporting of statistics for the group designated “autistic” is in its infancy.

I feel it is important to our understanding of autism to see clearly how it effects us as a group.

To know these statistics, to know the impact of autism on so many individuals, is the first step to begin to take action to help in the places it is needed the most.

Autism and Interoception

How are you feeling?

Have you ever heard of interoception?
This a sensory function which is still being described, and there is still some disagreement over what its definition should include.

Interoception is the sense of your inner self which includes the ability to feel what is going on inside you.

The initial definitions were about giving a person ability to recognize inner physical symptoms of needs: when you felt hungry, thirsty, needed to go to the bathroom, felt pain or discomfort in your internal workings.

The definition has been refined over time and using recent studies now includes also your emotional status.

Studies are in the initial stages but tend toward showing that neurological ties to the inner body are the same that are used for ‘feeling’ emotions, and that yes, emotions are tied to physical feelings as well.

We all know that, if we think about it. Tension headaches, anxiety stomach aches, the burning that comes with anger and the churning gut of distress, and how do you suppose the term ‘heartache’ was coined?

Right now there is debate over which comes first, the physical sensations or the emotional processes involved in recognizing ones “feelings”. Some scientists are saying that the physical responses are the initial ones which cause us to then recognize the emotions behind them.

I think the jury is still out on that idea, but it is interesting to think about the implications.

Interoception as it is described today is related to recognizing physical and emotional status of our inner selves. It is the neurological sense that tells us ‘how we feel’ in the most literal way.

How is this likely to be tied to autism?

Interoception is believed to exist because of human neurology. It is being defined as another sense.
We are equipped with an internal monitor through a network of nerves which sense and report “how we feel”.

Autism being a function of neurology and strongly tied to sensory processing, can show its effects in any part of the human neurological system.
Many autistic people are not good at recognizing when they are hungry, thirsty, tired, whether their bladder is full, and on and on.
We are notoriously poor at sorting our emotions as well.
All of these issues are related to interoception because they are all issues of sensory processing within us.

I will use imaginary Sally as an example.
Sally was late to be toilet trained, she simply was not able to tell when she ‘had to go”. She often wet the bed. Her body did not wake her when her bladder was full because it did not recognize that discomfort.
Sally had a ruptured appendix when she was 25, and did not recognize the abdominal ache, which she reported as vague and undefined. She finally had uncontrollable vomiting which drove her to the emergency room where she was barely in time for her life to be saved by immediate surgery.
Sally will get so involved in a project that she forgets to eat, and when she finally does eat, she does not know when to stop, often getting sick from overeating.
She is known for her volatile temper and her extreme emotional outbusts.
All those struggles are likely to have their base in processing input from her interoceptive system.

Do you have signs of interoceptive struggles in your own life?