After diagnosis

What next?




What happens when older adults are diagnosed with autism? Are there supports or therapies

which can explain this surprising diagnosis and help us understand our new autistic selves?

How will life be different? What do we need to help ourselves transition to this new definition

of ourselves?

Recent discussions in some forums I check out each morning have given some great insights

and not all of them are good.


On the question asking how knowing our autistic diagnosis has helped us, the great majority responded by saying it has not!

I must say this surprised me, considering how much better I feel I am doing now I know myself better and now I better understand my struggles.
For the majority giving answers, simply understanding how one struggles and why has not been enough. Those struggles still exist, even though they have been given a name (autism).

Most respondents said they needed more help. The great majority wished for available therapy to help them adjust to the new information and understand how to cope with the changes this brings.

Many said they could not break down the information of knowing their struggles to understand how to make adjustments and accommodations for themselves; they sought insights but struggled to find those new coping mechanisms on their own.

Many thought they could use another person to help in day- to-day functioning, actions requiring “executive functioning” struggles were the ones mostly named: household tasks such as cleaning and laundry, self care including bathing and other hygiene issues, food preparation and shopping, bill payments and financial struggles were all mentioned.

Finding affordable housing, and transportation issues were also discussed, as well as seeking persons to advocate for them in many transactions, medical, legal, etc. and for helping with filling forms, making applications, finding the services needed. Many services may be available, but finding out about them and applying for them seems insurmountable in difficulty. Even learning of local connections who might help is difficult at best.

Many wanted training in job skills, specialized education, and help finding jobs, perhaps getting accommodations for some sensory or other issues they were dealing with.

Some of these services can be provided through the state level insurance mandates in the United States that now say adult diagnosis and therapies/treatments must be covered (medicare too).
Others may be accessible without the word “autism” ever being raised. Locations where individual help is available vary considerably from place to place, so there is no general outline to tell us which steps to take to get what sort of help.
Getting ourselves connected to the networks used by other groups is complicated and for those who struggle with social issues, can be overwhelming/terrifying.

The forums I attend are international. In other countries there may be nothing at all to address autism . In some there may be agencies where one applies first. Here in the USA we ( autistic elders) are lost and on our own for the most part. Raising awareness is the first step.



Who benefits? Follow the Money!

and “nothing about us without us”


I will be attending my first Developmental Disabilities conference at the end of the month. In preparation I have been looking at the state’s setup for supporting autism. Most states now have some mandates requiring insurance coverage for diagnosis and treatment of autism in adults. Requirements for coverage differ from state to state.

The state I live in (MIchigan) has established a “state autism board” to guide and direct autism support activities.
I was not the least surprised to see many persons highly involved with autism, ABA therapists and consultants, Insurance Navigators, and some very active in Parent groups like Autism Speaks. Oh my, can you spot what’s missing???
All of the people profiting from autism treatment and insurance benefits, not a single autistic person among them. !!!
Who gets all the money pumped into the “support” (financial) of autism from government ( national, state, local) ????
Maybe those groups??? hmmmm???
Who decides how that money will be spent? Who decides what treatments and practices are most “beneficial” and to whom ???

( hint: it is probably not anybody who is autistic).

New topic same subject. There are almost no therapists working with adults, and doing adult diagnosis in this state . There are a few who don’t take insurance, cash only. Very few and far between. I wonder why some enterprising medical college, hospital or similar institution of knowledge and learning does not set up an adult autism clinic?
Why are teaching colleges not offering instruction using latest information about autism diagnosis for adults as well as children?
There are hundreds of thousands of autistic baby boomers who remain undiagnosed and who could benefit greatly from therapy for emotional as well as physical struggles and addressing trauma from years of struggles without knowing diagnosis.
Now that most states mandate insurance coverage for autism diagnosis and treatment (in adults too, yes!) I hope to see great things come of the newly available money to be made .

Gerontology and all support structures will be dealing with autistic adults (and autistic adults dealing with them), In very large numbers as boomers all will be over 65 by 2030.

A wise medical school will begin to train specialists in adult autism to meet a need which is going unfilled and is becoming in demand as the older generation learns about adult autism and wonders if they too might be autistic.


Persons thinking ahead will see that beyond the ‘baby boom’ generation there are generations of already diagnosed adults reaching maturity, needing supports, needing help adjusting to adult life, needing therapy and who will eventually also be ageing into a steady stream of autistic adults needing professional care and attention, diagnosis and support of all kinds.


There are only a handful of clinics and diagnosing entities focusing on serving adults in this country. One I know of in Illinois has such demand for services that people make appointments for diagnosis and subsequent treatment up to 2 years in the future… people are standing in line for services.!!!!

Who will see the need and fulfill the potential?

Students considering medical and support careers would do well to consider some branch of autism specialty which actually uses today’s information to diagnose and address autism struggles.

( have you noticed that ABA is not scientifically proven, only results based, and many autistic people both those who have “been treated” and those who were lucky enough to escape due to old age- are beginning to revolt on behalf of children undergoing what is being exposed as damaging and even traumatizing “therapy”?)

Diagnosing neurologists and psychologists specializing in autism are needed desperately.
Hospitals, private practices, psychologists and therapists already in practice could add adult autism specialties to existing services.
I can not understand why the medical communities, usually so quick to see profit in certain branches of medicine, have let this one lapse????
Watching with interest. The next few years should be very informative.
Will autistic people benefit?

Autism : Teaching compliance

Making the perfect victim

One topic that keeps coming up on the autism discussion forums I belong to is how many of us have been victims over time.
We seem to have suffered more than average rates of crimes ( simple physical and or sexual assault, fraud, intimidation, manipulation for profit, use and abuse by those we believed were friends or even domestic partners, on and on).
One of the most asked questions is “how can I know when people are taking advantage of me, how do I figure out if what I am experiencing is abuse?”
What makes us so vulnerable to this sort of use and abuse?
I believe it is a number of factors.

One of the characteristics of autism is its “black and white thinking”. We take things literally and often do not see what is “behind” a statement or a behavior.
If we think we see a duck, we do not suspect it is really something else.
What we think we see is what we believe.

We tend to be anxious to find approval and friendship, and romantic love. ( Isn’t that human nature?)
But it seems we are not equipped to see (hidden motives) behind the face that is put on to gain our confidence.
We take things literally, so if my man friend tells me he loves me, do I even suspect he does not, but has more nefarious purposes? (gender used in this case is just an example and does not reflect that this can and does seem happen to all of us regardless of gender). Manipulative use can come from people we see as ‘friends’ , buddies from work or other situations asking for money, asking us to give them homes with us, help them do things, even directing and or pressuring us to do illegal things, either innocently, or knowingly.

I know one thing that made me very vulnerable was being taught to be compliant and obedient. This was the style of child rearing practiced in the 1950’s and 60’s. Kids were meant to be seen and not heard, they were to be polite and obedient to adults, neighbors, teachers, the minister, the folks in the stores and other public places. We were taught unquestioning response to adult demands.
I was punished over and over for asking why, although I was looking for clarification of intent or purpose and not questioning the actual commands that were given to me.
I was taught to sit still, to not speak unless spoken to, to be in all ways at all times a “nice little girl”, to be a “lady”, and society’s expectations for women to please men was role modeled for me.
I was taught to seek approval in everything I did, and to wait for directions, not to take my own initiative, and to in all things be subservient, looking for approval.

This ties in to lifelong struggles to appease any person I come in contact with. I must strive to please every person I meet. I learned this behavior as a very young child and it was the safest way to live in my world.
That approval was the only way I was able to keep myself safe, if I did not have approval and permission or direction from somebody else more powerful (and EVERYBODY was more powerful) then I did not proceed, for it was not safe to do so.

Thinking back, I realize I had learned these lessons and this behavior before I even entered school, and subsequent experiences throughout my childhood repeated and re-enforced the lessons.
I had learned not to be self assertive under any conditions, to wait for instruction , to seek approval. I was not allowed to get angry, and was punished severely for any angry or resentful behavior.
Combine that with my autistic lack of insight into human nature, lack of understanding of social and other interactions, lack of life experience and lack of explanation for any factors beyond ” Do it when I tell you to, and how I tell you to” … you can understand how I was ‘set up’ to fail. I was raised to be the perfect victim, and this is what I became.


Flash forward to today’s ABA , where kids are taught the exact same things to make them “socially acceptable” and “cure” their autistic behaviors.

They must endure adult pressure for extended periods of time, are taught to seek approval, act only when told to act and in the way that those adults choose, how and where they choose. This is performed for up to 40 hours a week usually before the child enters school.
ABA kids are taught to accept touch from those in power over them, uncomfortable, often sudden touch in the form of tickles, hugs, etc etc and taught to endure and act to please the controlling adult.
They are taught to do without protest the rote projects they are faced with performing.

ABA kids are taught to perform for approval or ‘rewards” such as a bite of a favorite food, much as dogs, or circus animals have been trained for years.


What will become of them when they are faced with demands from society, from classmates, from unreasonable bosses, co workers, high pressure sales persons, or demanding manipulative devious “user” adults who demand money, sex, or other unreasonable and unhealthy behaviors?
Will they have been taught to discriminate, or will they blindly try to appease those sorts for approval?

I can tell you which behavior I chose and used until a suicide attempt at age 30 sent me to therapy, where I learned how to become healthily self assertive.

I did not know there were alternatives to appeasement behavior. I had to be taught!

38 years later and I still struggle most days with appeasement behavior.
( for more information look up” freeze, flight, fight, fawn” patterns of behavior.)

See also “learned helplessness”

Are these early diagnosed children any better off than I was?


I can only hope that they eventually receive close attention to teaching about human interactions, how to spot people with devious intent, and are taught as soon as possible to become self assertive and to express their own personal boundaries and needs in a clear and healthy manner.

I greatly fear that in most cases this won’t happen.


There are so many autistic people in positions of being used and abused, we do not intuitively suspect others, it is something that needs to be taught, this self defensive questioning of other’s motives.
I have always said I had to have things explained that seem to be obvious to others.

Here above in this blog is a very good example of my spoken perception.


I wish somebody had taught me those things early on.