Autism tools you can use

How to find help

This continues regarding tools you can use to help yourself live a better life. The same goes for those who care for an autistic family member or care about somebody who is autistic.

Many times we struggle with problems that are too big to handle alone.
Yet we are afraid to reach out to others or ask for help from professionals or groups which may be able to provide information, training, or other support you need.

If you are afraid to ask for help by yourself, please try to get somebody to be your advocate, whether you contact an attorney, social worker, minister or priest or others in a church group, service groups, there are specialists who are waiting to serve your needs and help you find ways to make your life better.

If you have struggles communicating there are people who can teach you skills to help express yourself better.

If you have needs for housing, food, clothing, there are agencies and individuals who are willing to help.

If you struggle with problems with drugs and alcohol or other substance abuse, even over eating, there are professionals and support groups waiting with tools you need to succeed.

If you struggle with emotional overload or anger management issues, there are professionals and support groups available.

If you need help with almost any struggle, there is help available.

There are things standing in the way of getting help, though. First we have to know ourselves well enough to understand our struggles. Second we have to admit we need help with them. Third we have to reach out to others to find the help we may need to overcome these problems.

Which stage are you in? Do you know your worst struggles? What brings the most frustration or pain to your life? Do you know why? How can we sort it all out?

Therapists, Social workers, and psychologists can help us understand ourselves better. We can find information online, in books, self tests, or talking with others in support groups or online forums. Take time to think through the biggest problems you have now or have had in the past. Then know that you don’t have to work on those problems alone.

Your Doctor might be a good place to start. You can ask for referral to professional help if your problems can be helped by medical professionals.
You can call the local crisis hotline and ask what agencies they have on their lists that could help you. The more specific you can be about your struggles, the more likely they can be to match you up with somebody who can help.

Hospitals and churches usually have lists of helpful connections, as do all social agencies and usually senior citizens centers have resources available. These can be to help almost any issue from depression and suicidal thinking, mental illness, homelessness, hunger, domestic abuse, child care, respite for caregivers, health care, home help, anger management, substance abuse, sexual abuse, and many other issues.
There are resources available for learning better communication skills, finding help for specific chores such as cleaning, laundry, mowing or snow shoveling, helping with transportation to medical appointments or grocery shopping.
The list of helps available is long, and there are usually more resources available in larger urban areas than in small communities. If you are afraid to reach out, you can check a lot of things online, or perhaps you will have a friend, family member or other willing soul to help you search out answers to your struggles.

There is no reason to struggle alone when there are so many ways to find the help you need. If you struggle with overwhelming issues, feel lost and alone, even if you can’t be specific but only know you need help, there is help available.
Please reach out, you do not have to do this alone.

Autism and ageing

Special hazards in ageing are magnified in autism.

I took some time this past summer to help a friend who had fallen and had to have surgery for multiple fractures that resulted.
Yesterday I heard from another friend that her husband had fallen getting out of the tub, and that she had fallen on the concrete walk outside their home.

I fell 2 years ago and did severe damage to muscles and tendons of one foot. It took months to recover full function.

I think you can guess where I’m headed with this one. All of us are over 60 years old, all of us were injured due to falls.

National council on ageing provides some information to put the importance of avoiding falls into perspective.

One in 4 people over 65 will have a fall this year.

Falls are the leading cause of fatal injury in those over age 65.

Falls are the most common reason for being hospitalized in the over 65 age group.

Do I have your attention now?

Autistic people may be at even more risk than the general population because of our struggles with seizures, poor proprioception, general poorer physical care and body condition, difficulties with executive function, and other autism associated struggles.

As any person ages, they become weaker, have problems with vision, slower reaction times, and other failure of our bodies to work as they used to. Health problems such as hypertension, stroke, heart disease, etc all make us more vulnerable to every day accidents.

What can we do to help ourselves live safely and thrive as we get older?

To prevent falls, we can talk to our doctors about our physical condition and medications that might interfere with coordination and balance or perception. We can ask for help in assessing our homes for safety hazards, as many senior programs are available today to help with risk assessment, therapy for balance and coordination, etc. Make sure your eyes get checked and that you have the right prescription lenses. If you have glasses use them, don’t try to get around the house without them!

We can ‘do it ourselves’ or ask family, friends or others to help us assess the risks associated with conditions at home.

Remove clutter from floors and especially hallways and stairs.

Provide safe footing on floors and in bathtubs and showers.
Remove throw rugs and look for trip hazards such as raised thresholds, step-up or down floors of multiple levels. Look for inclined or rough transition areas from one type of floor to another.

Use painted or bright colored tape to mark these places so that attention is called to these trouble spots if they can not be modified. Use traction strips or no slip mats for bathrooms and kitchens, and mark the edges of steps with bright color or white so they are more easily visible.


Be aware of porch and basement floors which can be so hazardous and slippery when wet. there are special textured paints which can be applied to most surfaces to provide better traction and add non-slip qualities to floors.

Wear clothing that is close to your body and does not drag (long cuffs, billowing legs or skirts of pajamas or hemlines of robes, trailing belts of robes, etc can all catch your feet, legs, or hands, and can be caught on projecting knobs, stair rail ends, or other furniture details.
Wear safe footwear.. no scuffs, socks, slippery bottomed slippers, bare feet, or thong type sandals. Shoes with non slip soles are better. Wear them from the moment you get up until you go to sleep at night, any time you are standing upright, wear those shoes !

Install hand rails and grab rails where they can help you most, bathrooms and stairways, long hallways, etc. You might need to use a walker or other assistive devices to help yourself rise from furniture or your bed. Your toilet might need a ‘booster seat’ and/ or bars on each side to make it easier to rise after use. You might even need lift/assist chairs or other electric boosters to help you rise from prone or sitting positions. Always use the hand rails going up and down stairs. Don’t carry things that require two hands up and down the stairs. Find different ways to get those things where you want them to be. Ask somebody to help or carry less at a time. Arrange things on one level as much as possible to keep from having to make trips up and down for things such as laundry, the freezer, or to care for pets etc. And be aware of pets around your feet as you walk or go up or down steps. Even if they were sleeping in the other room a moment ago, they will likely follow you closely if you move. ( you know that!)

Make sure you hide cords from lamps and other electrical devices so that they are not trip hazards. Make sure your pathways are lighted completely, no walking around in the dark! Use night lights everywhere you can. Make sure the pathway to the light switches in each room are clear. You might even use glow-in-the dark paint to make the switches easier to locate in the dark.

If you are aware that you are losing muscle tone or getting weaker, you might be able to get therapy or be prescribed particular exercises to do which will improve strength, balance, flexibility and grasp.

If you think this doesn’t apply to you right now, realize that it surely will apply as you get older. Think ahead about what you can do to ease the risks of injury or death because of falls, then please take action.

Second Phase first attempt at diagnosis.

Having left the follow up session in absolutely stunned confusion, being told in no way could I have autism because of my ability to communicate, hold a job, be married, and be aware of having been bullied all my life… (autistic people don’t do that) I was both shocked and simultaneously frustrated, disappointed, and dismayed.
I was just sure that the answers he gave about my autistic state were wrong… I knew that autistic people could communicate, could work, could have relationships, and could know when they were being bullied. The ideas the Dr quoted to me were from the late 1960s when diagnosis criteria were completely different. Still I questioned everything about my life up to that point… could I have got everything that wrong? How else could “everything” be explained, especially with the alternative diagnoses he saddled me with at that point. ??

I began to think about how to handle what I thought was a completely unfair set-up, where I was assured the doctor had much experience with autism, and in the end finding out he had never diagnosed a single person with autism.
I first sent him a letter (depending on his assurances at the exit assessment meeting that I could, and should, contact him with any questions once I received his written evaluation). Then I emailed him when there was no response. In both communications I requested further appointments to discuss autism, referring to the appointment desks’ original assurances that he was experienced with autism and diagnosis.
Barring more appointments with him, I asked for referral or joint or referred individual sessions with any child autism specialist in his practice- none of the others were willing to accept clients over age 18. (he is head psychologist over about 30 others, counselors and many specialists listed for autism, which was the reason I approached this clinic). It was listed as an autism resource on the “Autism Alliance” page I found on the internet.

No response for a month.

Next step was to contact “Autism Alliance” whose page clearly states that they are advocates for autistic people…. I thought they might like to know that the clinic they recommended was not helpful for people over age 18 and told them of my experience. Two things happened after my email to them… The next day I got an email from the Doctor saying he could not help me. I also got a phone call from Autism Alliance saying they had never had a complaint before, and that their providers were all carefully screened. Then they told me they would be glad to advocate for me and help me find another qualified provider who would be more helpful. I felt as if I had been heard and since they posed as advocates, I did not suspect what would happen next.

I got several phone calls and emails from Autism Alliance, all saying they were working on finding me a follow up counselor with autism experience who would work with me. I was gratified and felt assured the issues would be resolved and I would get a good psychologist. I was assigned my own personal “navigator” to help me find my way through the system.
They turned out to be a predatory insurance sales group who were looking for any psychologist or therapist who would take me on for a percentage of the referral fees.
It ended up that they tried to hook me up with one counselor in my area who would think of this idea as acceptable, a woman who only recently had renewed a lapsed “counselors” license which was either expired or suspended after a couple of years of practice as an infant therapist/art therapist, and who had a sociology degree.( the internet is amazing, all the things you can find if you dig around for a while!)

Insurance was not able to cover visits to this woman at all, but the navigator pressed hard in phone calls over several days. I would have to pay cash but I could get a discount! At this point I realized they were not looking out for my interests at all, but were “insurance navigators” who were in the business solely for profit as getting a cash percentage fee for referrals of any patients. There seemed to be no concern at all about fitting my needs or conditions, but they pushed me, “reminding” me that the diagnosis which the other doctor had given me recommended how much I needed therapy and that I should go!!!! ( it seems as if they had forgotten that his diagnosis was in dispute!) At this point I was alarmed as well as angry!

No thank you.


Please educate yourself about “insurance navigators”, who are definitely “for profit” groups which perhaps may do good for some folks but who were a complete disaster for me. In this case it appears their agenda on the website was quite hidden… and the thing that helped me is because I did not immediately assume they knew what was best for me. I knew the thing they were pushing me to do was not what was right for me, and I questioned why they were doing it. A little belated research and I had the answer.


I told them I no longer needed their services, that I had been able to find what I needed and thanked them.


After a couple more emails and another phone call, with my firmly repeating that I no longer needed their services, they subsided.


I count this a lucky escape, and warn others needing medical help of any sort to be alert when you hear that word “Navigator”. When I once again gather my emotional resources and quell the anxiety this brings to me to re-live it all, I will continue with the ‘next chapter’ in my search for diagnosis.

Finding out

Once I suspected I was autistic, I began to research online resources with special interest in older adults with autism. I found some surprising statistics. The CDC estimates today from studies done in 2015 and published in 2018, that autism is present in 1 or 2 out 59 people. Of those people 3 out of 4 will be male. Autism was originally described to be only found in males, and it is believed by many that the diagnostic criteria may need to be changed to include traits of autistic women, which are being found to differ from those of males. Autism diagnostic criteria (DSM) as it stands today has been used only since 2013, with varying other tests being used before that date. First time Autism was on the list for diagnosis as its own diagnosis in the USA was 1980 when it was listed as “infantile autism”, removed from its previous category under forms of schizophrenia.

My biggest question : Weren’t there autistic people before it was officially recognized and sought as a diagnosis beginning with infants in 1980? What happened to all the adults ? Autism certainly didn’t just ‘appear’ .