Tag: Adult autistic diagnosis

Millions of autistic adults

undiagnosed in the USA today.

Per the USA’s Center For Disease Control (CDC) there are 5,437,988 autistic adults as described by those being over age 18 upward in the USA today. CDC claims this statistic as 2 percent of today’s population in the USA. Census numbers after 2020 may drive that number still higher.

A notice posted April 27, 2020 claims the CDC has determined these numbers so that states can be aided in budgeting and planning funds, etc. regarding diagnosis and support (“treatment”) for autistic adults. All states now require insurance plans to cover diagnosis and supportive therapies for autistic adults. Children ageing out of the system, which used to close at the age limit of 18, are now going to be supported as adults as well.

The happy side effect of parents of today’s early diagnosed children’s and young adults’ activism ( this was entirely unintentional, I am sure within myself) is the new availability this could give older autistic adults in this country for access to diagnosis and support.
Support plans will soon be in place for adult autistic folks. Will elders once more be overlooked as focus is on the younger generations, with most Americans never suspecting the hidden millions of autistic adults struggling without diagnosis and support that many so desperately need?

Educators of those already practicing diagnosis and those now just learning how to diagnose and recognize autism must learn how autism displays differently in all adults and how diagnosis of adult females may be more complicated than today’s standard diagnostic criteria.


Statistics posted by the CDC show that males ( children) are still diagnosed at much higher rates than females.

There are no known statistics on how many adults have been diagnosed, or the proportion of males to females who have received late diagnosis.

I see the CDC’s post as a ” first light ” showing in the attempts to find diagnosis for all age and gender groups who have struggled lifetimes with autism and never knew, never had help, never suspected.

I have been feeling frustrated and discouraged lately. My personal plans to offer local talks and information to local groups likely to encounter un-diagnosed autistic elders has been completely shut down by Covid restrictions.
Now I am considering a different, possibly more effective approach to gaining more diagnostic and support structure for older adults with autism.
College classrooms are the places that need to offer more information about autism and how it presents in adults and the elderly. Professional groups for individual practices need to be alerted to the presence of adult autistic people. Political entities who plan and portion out those huge budgets need to know about adult autism. The list of places to raise awareness is practically limitless!

As a group, older autistic adults need to speak out about finding diagnosis, and need to bring attention to the need for support, to organize much as the parents of autistic children have.

If population statistics are correct, the adults in the USA who are autistic out number the children who have been diagnosed up to age 18 .

Time to speak up and ask for educated diagnostic and support systems.. Laws for insurance coverage have changed. Colleges and other schools need to be aware and make changes to provide for the future.

Baby boomers will all be over the age of 65 by the year 2030, just 10 short years from now. Will elderly autistic populations get the support they/we will need as they/we age and rely on others for our medical and physical decline as we grow older?

Will young adults “ageing” into the system get the support they need? CDC has taken the first step by providing numbers and an “authoritative” source of information on which individual states will be basing plans now required by law.

Many of us will be watching with interest.
If we are able, most of us ( ageing adults who are autistic, whether formally diagnosed or not) can help raise awareness and place social pressure by making lots of noise to legislators, planners, providers. Call, text, write letters, email, write letters to the editor of your local newspaper, contact local TV or radio outlets…. whatever you can do, we need each other right now.
The demand is there, we know it, but I am not sure that those in the places we need to reach are hearing us. Please do what you can!

Diagnosis Dance Continues

Yesterday I was not at home for most of the day. When I arrived, my husband was waiting with a smile on his face and a story to tell.

Husband received a phone call mid- morning from my GP’s office. They wanted us to know that they had tried to give GP’s referral to the Diagnostic Clinic in the other state and that the Diagnostic office was not making appointments until July of 2020. Did I want to go ahead and make an appointment?

Yes, Husband said, continue to attempt to make appointment. GP’s office said OK and that I should expect to hear from the out of state Diagnostic Clinic in a while for them to set up details, date, get info, etc. Who knows how long before we hear from them?

Then when I had properly processed and digested all of that, and was beginning to settle, my husband (secret self satisfied smile on his face) said.. “then I got another call”

It seems the kind psychologist who had been so ill that our diagnostic session in July had to be cancelled was on the phone, wanting to talk to me. When he learned I was out, he spent a period of time talking to my husband and apologizing profusely about the fact that we had not been notified about our previous cancelled appointment . Husband assured him that we were more concerned for his health than we were worried about the cancellation, Things like this happen. Then psych Dr told husband that he was ‘sort of back’ and that he wanted to make an appointment to do an assessment with me if I still wanted to proceed.
Psych Dr explained to my husband how we would go through joint and individual sessions of discussions about my behavior/traits, etc and that I might be given some tests.

Testing is to take 4 to 6 hours. We would get a written assessment at the end of it, no need to come back again, and further discussion at the end of assessment as well.
We want to do the testing and diagnosis procedure ASAP while the Dr is still strong enough. I know he is in poor health and has officially retired, and I wonder to myself if he sees me as “unfinished business” or if he is curious from a professional viewpoint… or what dynamic or motivation has set this in place… I have no insight into other people’s thinking. But regardless of the motivators, I am profoundly grateful that the good psych Dr decided to contact us, to reach out despite his circumstances, and is willing to proceed.
I am to call him this coming Monday so we can set up a time for evaluation as soon as possible. I understand psychDr’s health is still very fragile ( not expected to recover) so trying not to get my hopes up. I feel stunned, delighted by the knowledge that the doctor is feeling better, that we have not lost him, and that he has actually invited me to complete my sessions with him at this time.
I will still set up an appointment with the out of state Diagnostic Clinic if they phone, as “insurance” backup in case we do not complete the interviews and diagnosis with Psych Dr as hoped.

I will cancel the diagnostic clinic appointment if we are able to complete with Psych Dr, and at a year out I will not feel too guilty if I have to do that. Many will be willing to take my place in line.

Feeling grateful, delighted that Dr is doing better and feeling stronger, and that I have another opportunity to get his opinion..Thankful that he would reach out to me in this way.

What an exceptional man! Feeling so lucky/blessed/ encouraged today. Things like this only happen in story books, don’t they?