Adult diagnosis of Autism

Things you might not know

It might surprise you to know there is no standard procedure to determine or identify autism.

There is not a genetic test, a test for chromosomes, blood test,
a certain “look” or appearance ( You don’t “look ” autistic) for autism.

There are no standard characteristic behaviors that all autistic people share.

Science is still learning how best to identify autism. In recent years more information has been discovered that has helped shape our idea of autism.

Autism’s rarity (believed to be 2 to 3 percent of the total population although nobody really Knows, since diagnosis is often missed, especially among minorities and among women).

There is not information about autism in many cultures around the world,
its frequency, nor is there understanding of autism at all in many places on earth.

Many diagnosing doctors in “developed” countries around the world are using information that is decades old, and these “specialists” may not be seeking new information besides what they learned as students.

Information in books is not up to date- by the time any book is published much information is already dated.

Consider then, that those professionals who went to school 30, 20, or even 10 years ago will be using information they learned that long ago from books that were outdated when they were studying them, and attempting to apply it when they try to diagnose autism.

Unless they have made autism a specialty, only 2 or 3 percent of any neurologist, neuropsychologist, or psychologist’s clients will likely be autistic.
With so little understanding and so little practice at sorting information regarding diagnosis, is it any wonder that even when we attempt diagnosis by a professional, so many of us (autistic folk) are given misdiagnoses?

Don’t be dismayed if this happens to you. You can keep seeking diagnosis with somebody who specializes in autism and has experience with adults, minorities, women, elderly, etc. depending upon one’s self description. There will be difficulty today in locating such an individual.

Many adults report living with misdiagnoses and being unsuccessfully medicated or given treatments for disorders they do not have until their autism was discovered. How many others are out there still, being given ineffective treatments, being told they are atypical or intractable examples of their (wrong) disorder?

If all treatment fails and you are still suffering and not finding change or relief for your diagnosed disorder, you may have been given a false diagnosis/label due to the lack of familiarity with autism and the many ways it can present itself.


Today autism is diagnosed by observing behaviors, testing neurology, discussing one’s life history and quirks and struggles. Everything depends on the skill and experience and up to date knowledge of the diagnosing professional.

The only criteria that is used is behavioral.
There is no other criteria at this time that can be used.

Autism is still new to science and until very recently there has been very little understanding of autism as having a neurological basis. Even in the past 5 years autism is described as being neurodevelopmental and based in the differences of our neurological development as compared to “average” or “normal” development in our peers.

Obtaining diagnosis for autism in adults will become easier in time as better tools are found and applied by more competent and better educated professionals. That time can not come soon enough for the over 5 million autistic adults in the USA, most of whom have no idea they are autistic.









How to Seek Diagnosis

Common question with multiple answers


It has been almost 2 years since my formal professional diagnosis. Since that time I have read countless blogs and participated in multiple forums for autistic people of all sorts.

One of the most commonly asked questions is “how do I seek diagnosis”?

Unfortunately, there are very few competent diagnosing professionals for adults with autism, or suspecting autism. Information about autism is being updated almost daily and many professionals fail to keep up with changing ideas and thoughts about autism.
It is still very common for an adult seeking diagnosis to be told it is impossible for them to be autistic because they are in a relationship,married, have children, make eye contact, hold a job, or live independently. Many diagnosing professionals believe that autistic people do none of those things.

Many adults seeking diagnosis are turned away with the diagnosing professional saying it is too late anyways, “you are already living your life and what good would it do to get diagnosis now”?? “there is nothing we can do for you now”

Those seeking diagnostic services as adults need to be aware that it is possible, even common to encounter rejection, mockery and ridicule, misdiagnosis, and misdirected “treatment” with both drugs and recommended “therapies”.

How do I find a competent diagnosing professional?
Here are a few strategies gleaned from much discussion with others over the period of time since I was finally able to obtain my own diagnosis.

Be prepared to travel long distances, pay out of pocket, and recognize that it may take a very long time.

Many insurance companies will not support “testing for autism” but will support psychological or neuro-psychological testing in general.

Check to see if your insurance covers psychological testing. Part of the testing process may be covered by insurance, medicare, or supplemental insurance, but it is likely to require co payment of some sort. If money is an issue (and for most people it is a big one!) check out the coverage you might have first. Ask if they will accept client (you) claim submission for out of pocket payments using “out of network” psychologists.


While you are talking to the Insurance company ask them if they can recommend psychologists or neuro- psychologists who accept their plans.


Do you know others in your area who have obtained diagnosis as an adult? Is there an autism group, support group, or other autism (therapy, social, etc) group in your area? You may find diagnosis by asking these groups for recommendations or referrals. Even if the group is for children or minors, many of those parents may also be autistic or have obtained diagnosis. Most will be glad to share the name of their diagnosing professional.

You may be told by insurance to visit your GP for a referral. Many GPs may know somebody in their professional circles or within the group they practice in. Many will not .

Finding diagnosis can be a struggle of its own, things are gradually getting better, but for most of us who missed diagnosis in the 80’s and earlier, we can expect to have to be persistent and diligent in our search and to rely on patience and self care to see us through.

If personal contacts do not bring forth names of professionals willing to work with you, you can ask in forums and pages on the internet.

There are lists in some internet groups depending on location, which have contact information for diagnosing professionals.

Cities with high population, teaching hospitals, and medical colleges will be more likely to contain a professional who is experienced in screening adults for autism.

There are individuals who are willing to do diagnosis today online or on the telephone using webcams and other technology. Covid has made this possible and can be a blessing for some, but be aware that if you are seeking disability or legal accommodations in the USA you will likely need to present documentation from a USA doctor and it will have to be part of your medical records.
Internet medicine and related practices is full of fraud and if you can not ascertain an established practice with a physical address, phone, email and other contact information, or if you can not find documentation from the state (Doctors and businesses must register and be certified or licensed by the states where they practice, and those documents are public record) then do not proceed!
Verify credentials and any internet information using at least 2 other sources. In eagerness for diagnosis, don’t be duped by slick imposters and tricksters.

Locating possible professionals is only the beginning!

Calling or emailing for information comes next.

1. Express interest in obtaining testing because you suspect you may be autistic.

2. Ask if the professional sees adults, older adults, women/or other descriptions of your self identity

3. Ask how many autistic diagnoses the professional has made. How many women, etc?

4. Depending on the answers, ask for the professional to phone you regarding your interest in being diagnosed. If the professional does not call you back and you are pressed to make an appointment, do not proceed.

5. When the professional phones you, ask the questions 1 through 3 in person, and see if you get the same answers.

Do you communicate easily with the professional? Do they answer your questions and ask questions of their own? Proceed to make an appointment to meet and talk in person about the diagnostic process.

Do you feel as if they are being abrupt, impatient, condescending, or are angry with your questions? Do they push off or put off your questions and prompt you to make an appointment for diagnosis rather than a pre- diagnosis meeting right away? Do not proceed if these warning signs are present.

Other questions to ask: How many tests have been performed and how many adult diagnoses given?

How many women, or other self descriptions have been diagnosed?

Do they give follow up support? If so, what sort of supports are offered? ( therapy, support groups, reference to others who might be able to help with specific needs?)


Discuss fees and if you decide to make an appointment to discuss diagnosis processes, be sure you understand how the paperwork and billing will be handled ahead of time, so there are no surprises.

Some doctors will refer you to their offices for this part, that is OK, Be aware of your insurance company’s needs regarding diagnostic assessment, etc… do you have to get the appointment pre-approved?

More discussion about finding diagnosis soon.

Note: This process can be very discouraging and frustrating, especially for those of us who have struggles using the phone, camera/video communications, or have anxiety. Self care is so important.

Be aware that finding proper diagnosis is not generally easy for most of us today. (autistic elders).

Things will take a lot of time and we may reach many dead ends or barriers, but we are not without alternatives in most cases.













The cost of misdiagnosis

and missed diagnosis regarding Autism.

I have been searching and researching for information and studies, statistics, etc regarding the missed diagnosis of autism and its misdiagnosis as “something else”.

Interesting to me is that most times when I searched, I found many discussions, studies, conversations and articles about children being misdiagnosed with autism when they were not.

It seemed to me as though this is a common question among parents with newly diagnosed children. Maybe difficulty accepting diagnosis, maybe wishful thinking/ denial? I was amazed to find page after page of discussion about how this could happen.

I found very little regarding misdiagnosis of adults with something else when instead they should have been diagnosed as autistic. I have commented many times that there is a vast vacuum/ echoing empty space on the internet in place of articles about adult autism, finding older adults with undiagnosed autism, etc.

I participate in multiple on line forums especially for autistic adults. One common topic is how so many of us have garnered so many diagnoses of all sorts before we knew were autistic.
So often a forum member would explain that their bipolar, their schizophrenia, ADHD, Depression, anxiety, or their other diagnoses were atypical and did not fall into the usual categories of definition. Many have been treated for years with partial to limited success. Many have given up trying to get help because the continual lack of success is so discouraging.

Discovering that they are autistic and understanding their diagnosis had freed many from series of unsuccessful treatment attempts, from shock therapy, over medication, institutionalization or hospitalization for intermittent periods, and on and on. Traditional analysis and therapy are often unsuccessful. I went to several other therapists before I finally found one I could communicate with, who understood me, and was able to help. I was treated with medication for years for depression and even more so for anxiety.
Now that I know I am autistic I have understanding necessary to give me a great deal of relief where traditional treatments had failed.

What if all of us had got proper autism diagnoses earlier? How much emotional pain, how much suffering, how much damage due to side effects of powerful anti-psychotic medications, how many social struggles such as unemployment, poverty,homelessness, suicidal behavior, emotional outbursts leading to trouble with the law, hospitalization, etc could have been prevented?

This post breaks my usual policy of not sharing documents and links to other pages because it explains everything I wanted to explain in my blog, in better words than I could explain it. Please read and think about how much we as a society have lost with our lack of understanding of autism, lack of training specialists and giving them tools to properly diagnose autism, the lack of access to diagnosis, the struggles and troubles that could be averted if we finally understood our own autism and were able to see how to make accommodations and to use self care or access tools already available in many places to help us in ways that we need. Finally needs of older undiagnosed adults is being recognized and brought to light. The voices of many have been raised in chorus and at least in some circles, we are being heard. Feeling grateful.

https://link.springer.com/article/10.1007/s00406-020-01189-w

Summary “so far”

This blog is already almost 2 years old!

2020 was one of the most confusing years yet.
Covid19 and its fallout have changed everything forever. Lots of us are scrambling in so many ways just to get from day to day. We know we are not alone in this.

Sorting my autism and finding ways to compensate or accommodate my neurological struggles has continued to be helpful.
Old painful memories are seen in a new understanding and finally put to rest. New ways are being learned, how to do things differently to make my every day life easier. I am having more insight and understanding of others and seeing how my own autism has worked and is still working in my life.
Self forgiveness and healing of old emotional wounds is in there too.

My goals to find and reach local undiagnosed autistic elders has failed miserably.
In our area there are few medical resources, let alone psychologists or therapists. My search for diagnosis showed me how few there were. I guess that is understandable because our area is so rural and such low population. Covid 19 set in, about the time I began my “awareness campaign”.
I began to contact local agencies, places that serve the elderly, the mentally ill, the homeless, the needy, medical/psychological groups, the local newspaper, substance abuse recovery, shelters for homeless or abused folks… I do not do well on the phone, so I generated an “autistic elders” email and began emailing these groups. I probably sent out 50 carefully worded emails. I got not even one response.

I wondered if there was anybody in these offices to sort emails. My email name might have backfired and never been opened due to the name and people’s thinking I was spamming to ask for donations. I hope to contact radio and tv stations next.

I was able to present a “webinar” through the local college which drew only 3 interested new people but at least as many supporting me through friendship. It was not recorded or saved for the internet. I am learning what works. I may take out classified ads in the local paper or on the radio. I have very few funds available for advertising, being a retired person with no income.

I am steadily gaining followers here, which is very gratifying since I am not attempting to self promote. So glad you found me and are here with me! I am grateful for all your messages of support and your interest, and hope you will share when possible, and hope that insights I have written have helped. If you have read some of the blog, you know nothing I have said is in copyright and that I want you to share freely anything I have said that helps!
Just don’t use my words as your own, OK?
Knowing each of us is different in so many ways, I do realize there will be “if’s, ands, and Yeah-buts” regarding any suggestions or thoughts I post here. I find that interesting too!

I have no idea what the future will bring. It is difficult to figure out what one person can do to make a difference for others. “think globally, act locally” was something I took to heart.
I can not change the world, but I can keep trying to find others in my own area and offer insights and suggestions to help the unsuspecting, curious, newly diagnosed older adults right here where I live. I know what a difference finding out about my autism has made in my life. I want others to experience that too!
As always, I will keep you posted.
Thanks so very much for your interest and your support. ❤ I am truly grateful!
Sending best wishes for a better 2021. Stay safe, self care always first! ❤

Undiagnosed Autism

and social struggles




go together. There are over 5 million adults in the USA today with autism (age 18 to 100).

Two tenths of one percent of adults in the USA are homeless. ( Gov’t statistics)
Some studies ( or ask a social worker in the field of homelessness) suggest the actual number is much higher.

Long term unemployment in the USA is around 1 percent.

9.3 percent of the population has a problem with substance abuse.

Studies link autism to a high ( up to 36 percent) percentage of autistic people within the socially struggling groups listed above).

Statistics in studies show that autistic people are more frequently victims of crimes.

Autistic people can be prone to trauma/cptsd/ptsd because of sensory differences and struggles to understand many social interactions or situations.

Admissions to hospitals for suicidal behavior/thoughts/ treatment have been documented to be so frequently related to autism that many hospitals now make mandatory testing for autism part of the initial admission procedure for this struggle.

Studies of autistic people related to health and longevity show greater risk for multiple health problems and shorter life expectancy.

To learn of our autism diagnosis is to open new opportunities for self understanding, self compassion, and self care.

Diagnosis provides insights that allow us to use new tools for self care and healing, both emotionally and physically.

Many autistic people struggle with missed or misdirected diagnosis, frequently reporting having multiple diagnoses which had been treated sometimes for years and don’t respond in the expected manner to psychological treatment, therapy, or drugs. When autism is discovered, many of the old diagnoses are no longer explanatory of the struggles the person experiences, autism fits the criteria better. (not always, it is very common to have multiple diagnoses and still be autistic) .

Knowing we are autistic allows us to get help for our struggles in a constructive manner with our self understanding and accommodations for our neurological struggles.

If you are struggling with social problems in any of these ways, or perhaps in multiple ways,
please check out the possibility that autism might be the answer you have been looking for.

Coping with anxiety

Autism anxiety, old age, trying something new

This is going to be more personal than a lot of my attempts to provide general information;
I am going to be teaching a little class for the “lifelong learners” group at my local community college. The title is “Discovering Adult Autism” . It will have basic information about autism’s history, what autism is and how it affects us, why undiagnosed people have needless struggles that could be helped by diagnosis, etc.
When I volunteered to teach this class I was offered live streaming or to wait until I could do the presentation in a classroom. Being old and unfamiliar with technology and being totally not visual in nature due to my autistic sensory processing issues, I asked to wait until class opened for personal participation.
I thought I would be teaching a very small group and have generated an outline, 5 pages of “handout” printed information.
I do not have the capability/access or experience, etc to produce visual format using today’s programs and graphics, etc. Very low key. Set it up as simple talk to local folks in a small classroom situation.
Just a week or so ago the ALL group leaders told me (did not give me the option) that they would be doing live streaming video. ( panic ensues)

I was not thrilled, having many self image struggles, and having avoided even photographs being taken of me for most of my lifetime.
I am adjusting to the idea that this is going to take place and have been told that the group moderator will do all of it without my being required to monitor screens, etc, which my visual and audio processing would make extremely difficult and stressful.
Instead she is supposed to tell me if the observers online have questions and to ask those questions for me to answer.
OK, I agreed to that.
Maybe I could pretend that was not going on and just give a presentation to the people present in class.
At age 68 (almost 69!) and being autistic, I am not too flexible or comfortable with new experiences… I see so many opportunities to humiliate myself. Lifetime of experience tells me this is likely to be the case in this situation too.

It is less than a week away and my program coordinator /moderator has not contacted me yet.
I only noticed that they had posted an online link to the thing for the group.
I repeat it here if anybody thinks they might be interested in watching.
Join Zoom Meeting
https://us02web.zoom.us/j/85307062424?pwd=RnQrZGRVRm9qYVF4bVE3N2xRa0J1QT09
Meeting ID: 853 0706 2424
Passcode: 863872 1PM Eastern time USA, September 30.

Evidently it will also be perpetually available on Youtube through the links of the group, ALL of Alpena.
The only thing keeping me from complete stampede and backing out is thinking about the possible audience that could be reached to explain about adult autism and how important it is to find the lost generations who missed diagnosis in their youth.
I think about how much life has improved for me with my new understanding of my own autism and how much diagnosis meant to the difference in my life from “survive” to ” thrive”.
Remembering how important diagnosis has been to my own life will give me enough determination to go through with this, in spite of my super anxiety and the desire to hide and withdraw from the potential disaster I see lurking, and which my mind is only too willing to dwell on.

Autism Awareness April

April has been designated Autism awareness month once again.

The word is getting out. Autism awareness and acceptance news is spreading.
This is a challenge to all of us to go one step more, some of us will make posts, give talks, write our blogs, participate in other awareness and acceptance activities.
I hope we can add awareness of autism in adults to the things we discuss this year. (2020)

Extrapolated from the most recently completed USA Census, There are 1.6 million children in the USA (2 percent of the total population of those under age 18) who likely are autistic.
Awareness is rising and help is becoming available for children. Never quickly enough but we are definitely making progress.

Children do grow up. Here is a statistic that might surprise you.
Did you know there are likely 4.2 million autistic adults over age 18???
(2 percent of the adult USA population age 18 and older). Did you know the majority of them will be completely unaware of their own autism?
Please share these statistics. Those of us who are affected by autism know the difference a diagnosis makes in our lives.
Thanks for sharing, and for promoting understanding of autism in all ages.
Learn more here:

https:// oldladywithautism.blog/author/debrabrisch3436/

feel free to copy and paste! Share Share Share thank you.

Autism in Adults USA

extrapolation from Census information

By the numbers. The population of the USA is currently thought to be around 327.2 million persons.

Of those persons 209,128,094 are over the age of 18.

Using the 2 percent as the rate of occurrence of autism in the world population (an average obtained from statistics reported by various studies, estimates range from less than one percent to as high as 5 or 7 percent ) .
This means that there are 4,182,562 likely adults with autism in the population of the USA today. There are statistically 1.6 million children under age 18 who are likely to have autism. Check out the numbers. How many more adults in the USA are likely to be undiagnosed with autism given that autism was not even in the DSM until 1980, and not as we know it today.

Millions of $ are being made through diagnosis and ‘treatment’ of children with autism and every year 5,500 new adult autistics graduate high school and “out of the system”.

What about the millions of adults undiagnosed as children?

Why has somebody not seen the opportunity for working with elder autistic citizens for diagnosis, therapy, promoting health and self understanding??
A few people have.

We are slowly seeing a few “adult autism” clinics opening across the country. All have waiting lists of years, not months or days for adult clients wishing to obtain diagnosis, treatment, and information about adult autism.

What is keeping medical schools from teaching about autism as it presents in adults, and in opening such adult autism clinics?
What is stopping hospitals from providing these services?
Money talks.
All states now have mandates for insurance coverage of diagnosis and “treatment” of autism in adults.

What are they waiting for??????

How is it Different?

today, comparing “how it is” with “how it was”

We need to do better. I grew up in the 50’s and 60’s and nobody knew about

autism. I was raised with physical punishment and shaming, a harsh critical judging hand

or voices if I “blew it” when growing up. Spilled milk, bumping furniture or accidentally

running into other people, dropping things, mistakes in judgement or expressing “inappropriate”

thoughts or behaviors, using certain words, tones of voice, looking people in the eyes (yes, I come

from a culture which said it was insolent of a child to look at an adult when spoken to, especially

when scolded (“don’t you look at me like that!”)

Anything I did or said or didn’t do, I was locked into a ‘system’ that looked for errors and was eager to shame, chastise, scold, scorn, hit and hurt. Those are my strongest memories of my childhood. If there was love or compassion, it certainly did not register. Was it them or me?? Or both?


Is today’s child any better off?

Early diagnosis could be so useful! First the child is forced to go to compliance classes where they learn everything they do is wrong and that they have to tolerate everything any adult does to them, and taught that their only escape is to comply. They learn to be eager to please in order to avoid the constant pressure and distress and get the rote ‘treatment’ over with as soon as possible. Kids undergoing this “therapy” are resigned to their fate. There is no escape, no comfort, no way to avoid any demands. They learn to endure, to abide, to wait until they receive directions before they choose to do anything at all because that is safer than what happens if they don’t do that. Do kids like this have time to explore their world freely, to have new and exciting experiences, to try new things, to get stimulation and input from things that are of deep interest to themselves? Or is today’s therapy all about making the individuals ‘fit the mold’ just as I was at home and in school so many years ago. I don’t think as much has changed as it might seem at first.

I worked as a volunteer in a resale shop a couple of years ago. On a quiet day when nobody else was in the store, a young boy around age 10 came into the store with his grandma. He had his hands in his pockets, was rigid with tension and full of anxious movement.. he began to walk fast through the store, exploring without ever touching a thing.
Grandma called after him. “Tommy come back, stay with me or I will never take you shopping again” She scolded and warned him all through the store, giving similar threats. We will never do this again if you don’t “……” this minute! I could see he was anxious and also curious about what was in the store to see. He clutched a wallet in one hand. He had money to spend! I assured grandma several times that he was fine, that I was sure he would hurt nothing, that he was being a responsible citizen and I started helping her see him in one of the side rooms, hands still in pockets, just examining something on the counter. She sighed and said, ” it is so hard, he is autistic!” Did she expect he had grenades in his pockets? Did she think he was going to assault or rob somebody? What was so hard about his behavior and his presence in this situation? I could not see her point and told her he was doing just fine. I made sure he heard me defending him, too. 😉

After he discovered a little box of fossils, he wanted to make a purchase. She must have reminded him 3 times to look me in the eye. She seemed to despair of his behavior and told me he had an obsession over rocks and fossils. ( how trying! that happens to be one of my own passions). She was appealing to the wrong court. 😉
I asked her if he had ever been fossil hunting at our local park, where there are many interesting specimens to be found. Grandma had no idea. I asked to talk to the boy for a moment. He sat rigid on the steps nearby waiting anxiously for grandma to finish her own shopping. I sat a couple steps below him and asked first,” is it OK if I sit here a minute and talk to you? ” He said OK. I asked him if he might be interested in going fossil hunting at the quarry? Did that sound like fun? He said he would like that..
I told him I wanted to leave my name and phone number with his grandma so they could arrange with me to go fossil hunting with him and whatever friends or family members wanted to come along. He thought that was a fine idea.
I went back to grandma (who knew me from previous visits to the shop although we are not actually friends) and explained that I was a fossil collector too and how I would enjoy taking Tommy and whoever else he wanted to bring on a fossil hunt.
Evidently he had not gone on a fossil hunt before. The family instead was trying to discourage him from bringing home nasty, dirty fossils and rocks and trying to get him to do something productive and meaningful instead, maybe lessons on a musical instrument or summer camp for example.
I gave grandma my phone number and email along with my name and asked her please to pass my invitation along to the family, telling her the boy had already confirmed to me that he would like to do this.
Maybe that was not the way to go about issuing an invitation. I am not great on protocol of issuing invitations. I never heard from them, and never saw grandma or grandson in the shop again.
I wonder if the boy will ever get encouragement to feed his passionate curiosity. I wonder if he gets enrichment in any way besides whatever is convenient for the rest of the family. I wonder if he is told over and over “you are autistic so you have to do this ” make eye contact” etc etc etc .

Pointing out his autism to everybody and making it the focus of his presence is not any better than the labeling my family gave me of incompetent, stupid, mean, thoughtless, clumsy, etc etc etc… only now there is the added stigma of saying he is autistic AND all or any of those things.
What good is early diagnosis if the outcome is just the same as it was for me all those years ago when nobody knew? I see very little difference.
The only advantage with early diagnosis might be that the child could defend himself by saying “i can’t help it, I”m autistic”… which may breed a whole new set of behaviors and problems.

We have to do better with the tools available to parents with young autistic kids today. Kids need to learn they are cherished and valued and appreciated, not just labeled and seen as something that “needs work” to be OK and right in and of him/her/them selves.
How can we get families involved in such a way that the autistics in the family are every bit a part of the family, every bit as cherished, every bit as respected and cared for?
I am sure there are families out there where this is happening, and I am sure that there are many caring parents working hard to give their autistic children every advantage in a loving and supportive way.
But I think there is something deeper, something that needs to be found in raising an autistic child. That is to see the individual behind the struggles, to speak to them and explain everything possible regarding their autism and their care, their strengths and how plans are made to support and address their weaknesses and to tell them when new things are being discussed, including them in the decisions made when changing anything about the child’s situation, conditions, struggles, strengths, school or medical programs, etc.
It goes back to “nothing about me without me”. Not all children will be ready to share feelings, ideas, thoughts, and desires or give other input, but please understand the well known phrase “nothing about me without me” is applicable to family matters and matters relating to an individual in a family situation too. First and foremost I am a person. I may be your child, with a child’s understanding of my world, but I need to know I am important to you, and that you care, too, about my feelings, thoughts, wants and needs.
I will not be likely to understand, I will be frightened, I will fight, I will resent, I will not ever feel loved, cared for, or appreciated if I am discussed like the family cat or the houseplant on the shelf, with no acknowledgement of myself as an individual with thoughts, ideas, feelings, and opinions of my own. If I am suddenly thrown into new situations, classes, treatments, therapies, or programs without discussion, explanation, warning and preparation. Inclusiveness begins at home. Is your autistic child really a member of the family? Or is he or she first and foremost a burden, a pain, a responsibility, a tragedy, an annoying intrusion, useless, valueless, disappointing, and inconvenient? What does your child believe about himself and where do you suppose those ideas came from?