An adult autistic perspective on growing up on the Autism Spectrum.

To my valued readers, I would like to apologize for my lapse in posting. I am recovering from surgery. I not only have autism, but many female problems. I would love to have a child someday, but due to my debilitating endometriosis, my next step at 31 will be a hysterectomy. Believe me when I say that I am not looking forward to this surgery. However, the doctor says that people like me actually do much better on hormone therapy. The ability to maintain a consistent level of estrogen should actually help me with my autism. Therefore, that is what I am looking forward too. 

 My mother had a hysterectomy when she was 38, my oldest sister had one shortly after the birth of her only son, my youngest sister had on at age 26, and now the sister right below me is scheduled to have one at age 29. 

Cancer runs in my family and, knocks on wood; I have yet to encounter its devastation. My mother and one of my sisters have had cervical cancer. My mother continues to have cancerous cysts. 

Lately there have been questions on the message boards about cancer and its relation to autism. The studies are still in the early phases and I have little energy now to research the actual statistics; however, from the research of others there appears to be a higher percentage of cancer amongst those with autism. 

I really do value your patronage to my little blog here on today.com. Every time you visit, you help me to spread the word about autism and educate on issues related to it. I welcome any questions and will answer privately if you prefer. 

I am healing well, although it is taking some time. My surgeries seem to go better now that they lightly sedate me prior to entering the surgery suite, and almost immediately anesthetizing me. The worst part is waking up in unbearable pain; I am a big baby when it comes to pain. 

Should children on the spectrum ever have a child of their own?  

It has been a resent popular discussion in autism discussion rooms…sparking controversy wherever it has appeared.  

Some wonder about the intentions behind such a birth. Is it the wish of the potential grandparents to have a grandchild? Perhaps a spouse who wished to instill their genes for the future? What about the autistic person themselves? Are they capable of raising a child? 

With the differences between those on the spectrum and the individual severity in which autism affects each individual, this is one topic that is clearly one for debate. 

Who is to say that an individual is unfit for parenthood? How do you deny an adult who functions to care for themselves the ability to have a child of their own if they so wish? 

Certainly, there are circumstances that allow room for discretion. There are women who have reared children that are normal and healthy even though they are on the spectrum. In addition, there are cases where a severely autistic woman has had a baby that she could not care for. 

What is the cut off line? Who determines an individual’s ability to have a child beyond that of physical ability? 

Not me, that is for certain. In fact, my mother has even told my romantic partners to not me pregnant.  

Who is she to decide? Why would she go behind my back and say this to whom I have been dating for years? Does she know something I do not? 

I will not argue the abilities of those on the spectrum, only my own functionality and ability. Both of which continue to increase in spite of my own advancing age of 31. I knew when I was 20 that I was not ready for a child, and in my own opinion that gives weight to my wishes to pursue pregnancy at this point in my life.  

I have three sisters who all had children or pregnancy when they were not ready. One with an abortion and two with pregnancy before 18. How can it be argued that I am impaired to the point of not knowing if I am ready for a child?  

It took some time for me to mature to this point, but I am great with kids to say the least. When I was 18, I worked in a daycare and I absolutely know what it takes to physically care for a child. Beyond that, I know what it means to love a child, to have them in your daily life, to sacrifice for your own desires and needs for them…as I also have take in my nieces and nephew during desperate times of my siblings. I sacrificed sleep, sanity, food, time, and gained so much more from the experiences. 

I learned from these experiences, lost relationships to care for these children, and sacrificed the friendships I once had with my siblings to care for these children. I may not have been ready at that time for my own, but at that time, they became very much like my own. 

I used to sing them to sleep every night. Protected them from harm, no matter the source, helped them with potty training and school work, sacrificed my nights of sleep when they needed comfort, and gave of all of myself regardless of the limitations that my own autism has given me, Just like a true parent, I went beyond what I thought were my own limitations and surpassed the expectations of those around me; however, the most important thing is that I cared for them as if they were my own and met their every need and then some. If love were the only measure, then I would get 110 of 100. If care were the only measure, I would get 110 of 100. Moreover, if caring for two autistic children by an autistic adult could be measured, I would be off the chart.  

There is so much to me, beyond that of my autism. There is so much to individual people on this planet, beyond their own struggles and weaknesses. I am not a book…I have no definable cover. Only an individual with the same American dream. To prosper with a family and to be happy. 

I am happy now, but my pursuit of happiness also includes that of just one single child of our own. I have so much to give. Should you be so selfish to block my desire to pass on my own self, complete with love, to a child of my own?  

I am not the child I once was, nor am I a single word often used to define me. I am Jessie. 

If we accept that we have done our best, then we limit ourselves to that level of success.  

I will never be satisfied…

April is Autism Awareness Month. The title is an oxymoron for autistics like me, who struggle with awareness. It is not that we lack focus, just that we are often overwhelmed or pre-occupied.  

I look forward to seeing the campaigns for autism and watching television shows that do specials on this affliction. However, I feel as if Autism Awareness should be an everyday thing, with no set okay time to discuss it. With the number of children with autism growing at the alarming rate it is, it certainly deserves the publicity that HIV and AIDS had… 

Perhaps all of the controversy surrounding autism and its causes lends to its seemingly taboo. HIV and AIDS was a definite diagnosis, you either had it or you did not and how you got it was simple, through biological contaminants like blood or semen. There is not you are a little bit afflicted or you are severely infected with it. Either you had it or you did not. With autism, the symptoms are subject to controversy and you have to have so many contributing factors. Even the treatments vary. With HIV/AIDS, there is a regimen of treatments that have known results. Those with autism are lucky to find such success and often live with failing behavioral plans, lack the money to pay for necessary treatment, and are shunned in the systems schools and metal health facilities. 

So what are the similarities? Well when HIV/AIDS came out, those afflicted were treated as if they had the plague. There is no substantial cure, but treatment does prolong life. The first signs of both are often unnoticed making both hard to diagnose without further studies or tests. Both afflictions are struggling to find a cure. 

One of the biggest differences though is that we know how HIV/AIDS is contracted and thus can prevent infection. With autism, there is no concrete evidence or substantial theory as to what the causes are, or why some are severely afflicted while others manage to thrive. 

Perhaps my efforts to help spread the word about autism will keep it in the day-to-day world and off the shelf for 11 months out of the year. My only hope is that with the rising awareness that we can learn to prevent autism, treat it more effectively, find a cure, and wipe out a growing epidemic of 1 in 150 children having autism. 

A neuropsychological test could be key in developing new strategies to teaching those on the spectrum.

A neuropsychologist is specially trained to give this type of exam and to evaluate the results.

For me they were key in identifying my strengths and weaknesses.

This type of testing tests cognitive ability, something that I had never gone through before. Until I underwent this testing, which took for me the better part of a day, it was not known that I did not retain what I read.

Normal testing is designed to measure progress and not current ability. It is based on months and years of schooling, cannot easily distinguish cognitive ability, and is geared towards measuring what is retained.

Through much memorization and repetition I was able to gain much of the required knowledge for passing, even if barely, the tests given in a school environment. When I did show a lack of progress, special education classes were called for.

I took pre-algebra from 7th grade through 10th grade. Then I was transferred to general math. It was this 4 years of struggle that lead me to the belief that I cannot learn formulas. I can memorize multiplication, count on my fingers, and manage simple geometry. However, when the mathematical problem requires that I use a formula that does not follow a simple process of memory recall, it becomes nearly impossible for me to navigate.

Hence, my neuropsychological test led to a change in career goals when I started college. Actually, I would change my major 3 times before finding one that met my unique interests, goals, and abilities.

Many on the spectrum learn differently than others. Our brains are wired differently, thus the process of information transfers differently. I adapted in early education to most completely and obsessively memorizing my lessons. This reliance on memorization led to high marks in English, Spelling, Grammar, History, and other similar studies. However, when Mathematics took on a system of formulas, adding unfamiliar letters to numbers, I found myself lost not only in translation, but stuck on the first memorizations of early formulas. Every attempt to memorize more complex math problems only served to confuse me and further thwart my progress.

A neuropsychological test is very important for those on the spectrum prior to entering college. With out one, resources available for our unique needs are unavailable. It is important to keep in mind that if you leave college for a year that you must have a re-evaluation prior to getting the same arrangements.

I can certainly say that it has brought me up to the level of my neurotypical peers. Without the arrangements I have, I would not be able to complete the college level work required to complete my degree.

My niece, who is asd, also was late in talking and very delayed in actually speaking whole words, most often dropping the end of words, like for ball it was ba. ect…

She also did not play appropriately with toys. Could not do a puzzle until age 3, you know the kind with 3 or 4 farm animals, could not put blocks into a container with different shapes with different blocks…ect…

She also was VERY clumsy, often falling onto things she was attempting to maneuver or play with.

To get her talking more we started with rolled up paper or magazines and an empty paper towel holder…we would first make sounds, things she already knew.

She called everything dada, EVERYTHING. Therefore, we began with dada. Then we would make sounds and make music out of the sounds. It was a game she loved to play. Then we added actual words.

Baby sign language. She had only a few basic and they were all her own. More was appropriate to more, but please was the sign for milk, ect. We just used what she adapted to. The words followed later, sometimes much later.

At 15 months, she still could not chew her food. Almost choked in foods not cut small enough to be soaked with slobber before swallowing nearly whole.

Over time she over came this as well

There is much mimicry and persistence involved in teaching her new things. But learning to adapt to her styles of learning and her attention span really helped to get her going in the right direction.

As an adult on the spectrum, I know how difficult it is to “stay in reality.” Often times I find myself in my own world. Getting any child to come out of this protective comfort zone, as you know, takes a very persistent approach.

My niece would not pay attention to faces, words, or even television. Stimulating her was a battle, as too much would cause a screaming, kicking, hitting, biting, act…meltdown.

I had full-length mirrors in every room; we used to dance in the mirror where she was more comfortable looking at people and their faces. It is here she would make eye contact. I guess not having the physical confrontation of a person was less stressful.

Your floor time sounds inspiring. I would recommend keeping things as basic as possible. When you are introducing new words, develop key phrases she already knows and add only one word at a time. Play sound games, where you use the phonics involved in different sages before bringing it all together.

I know of a boy on the spectrum that can only speak in syllables, sounding our each letter of the word, it is the only way he can talk. For instance, hi is hhhh i; you is ya oo uh, and bike is ba ih k! eh. It may be difficult to understand, but he does manage to reach out of his world into this one in his own unique way.

Much like the speech of Sondra, it is a way that some people adapt to a language that can be as alien to us as our lack of it is to you.

Gaining better spatial perspective of the world around her will help your child to be less clumsy. I was put into ballet when I was six because I was left side of my body week, clumsy, and a toe walker with an inability to even stand flatfooted. It did wonders for my balance.

Perhaps some of these ideas can help others on the spectrum…

Shouldn’t we all remember that as human as each one of us are and united in that aspect of life, we are individuals.

My mother was DEVISTATED when her approach to abuse suffered by all four of her children led to problems. When her approach to helping us deal with it helped only my other three sisters she sent me to therapy, in hospital, and when that didn’t help she felt there was no where to turn.

Even medications that typically treat “most” people do not treat all people. The ever-growing pharmaceutical world can tell you that first hand.

A child with autism is still an individual on the spectrum and should always be treated as such. Every treatment should be geared to their unique needs.

Still, there will be some that do not respond to traditional therapies, and yet others that just take an incredible amount of time to show progress.

Know that your efforts are not wasted. Even those who have been in a coma for years have woken up and told of things they experienced while seemingly unconscious.

A vegetative state thought to make a person devoid of the ability to experience anything is now known that they can be reached. Those who eventually come out of it report knowledge of things that were once thought to be impossible for anyone in that state of mind to experience.

The brain is a mysterious thing, we can try to predict the possibilities; however, mandating that human experience is uniform and therefore everyone will benefit from this or that is absolutely incorrect.

Individualism is not lost on the autism spectrum.

Trying to find a “certified” autism specialist to treat your child may seem difficult at the moment…but the future hold much in light of the astronomical number of individuals on the spectrum continues to grow. 

In my own city, they have started a center for autism. Not to mention the classes available at my local colleges that pertains specifically to autism and preferred treatment methods for it. 

When I was a child, there was little knowledge of autism; in fact, my parents had nowhere to turn. Today there is such an interest with treating autism that psychology students can find specific classes devoted to teaching them how to teach children on the autism spectrum. 

I myself, as a psychology student, plan on taking such courses. It can only benefit my desire to help others on the spectrum.  

Perhaps someday I will be a teacher to those hoping to help those like me. If I can myself reach one child, I have proven I have purpose.  

However, if I can reach one future psychologist, one that can reach many, than I have exceeded my own expectations. 

If these courses can help a psychologist to treat autism, then they can certainly help parents to treat their own child. 

Yesterday I went to a very large discount store early to avoid the crowd. While walking the isles in search of my shopping list items I was spotted by an acquaintance and his wife. 

I think that I may have looked at them while pushing my own shopping cart, but I did not have any sort of recognition of them. 

I know that the man of the couple has a good sense of humor; however, it was lost on me when their shopping cart ran into a metal bumper and startled me. 

I am certain that they felt uncomfortable with my reaction and that they have no idea that I am autistic. 

I also know that my other half settled things and made certain that even I was okay before we went our separate ways. 

I know that the person beaming the shopping cart in my direction really thought that I had recognized him; however, honestly, when I am in a focused state of mind I really am just looking for a particular item and cannot combine face recognition with that task. 

I really felt bad for my initial reaction, startled to say the least. I tried to explain another time that I had been startled when my other half came to my rescue. 

I am happy it ended well, but for a moment, I was lost, scared, and ready to have a meltdown.

I began this response to an article a woman wrote about the life of a family with a severely autistic child. They did not give me enough room to post my thoughts so I brought it here and left my blog link for her to follow. The fact that my post will probably not see the light of day in her over 200 comments section also motivates me to see to it that I am heard. 

Speaking up is what I must do in this case, so here it is: 

It is certain that any article containing such a controversial subject such as aborting babies and cynical views of a life so different from your own would be a popular debate. Should we not remind ourselves that all of our lives are different? No one wants to do the dirty jobs, yet your trash is hauled off and your own excrement is dealt with by some person braver than you are. A life on the spectrum is lived not only by those afflicted with it, but also by those who are touched by it. If you were to have to change adult diapers in a nursing home you would probably hate your job, yet reality is that we all could potentially be that person in need of that change. There is someone in life to deal with all the nastiness of it. Our own dead bodies will have people to clean, deplete of blood, fill with embalming fluid, and even put make up on. You may not want the job, but it is a job that has to be done. Hate not the helpless and judge not the different, there is room enough even for autism…. 

The above was the beginning and here is what I really wanted to say: 

We do not get to choose what our children will look like. Blue eyes are as genetic as blonde hair and the potential for health conditions. There are cases in pregnancy that a severely deformed fetus is aborted and I will not debate the right or wrong of it. 

I will however debate a person’s view of a life unlived by them. How can you judge what you yourself have not experienced? You can stand outside the fence and take pictures of moments in time, but those moments and that experience is your own and reflects nothing more than a snapshot you took with your finger at an opportune moment of your own choosing. Your perception is also your opinion and although it is appropriate to own your own experience, it is completely false that your experiences are a mirror image of the experiences of others. It is irresponsible of you to attempt to describe a life as ruined by a child on the spectrum. 

In fact, many in the same shoes as your “friends” have used words such as fulfillment, satisfaction, special, miraculous, and perfect when describing their lives with a child on the spectrum. All parents have used the words difficult, tiring, impossible, unable, frustrating, and disrupted when describing their own children’s behaviors. It is not a unique phenomenon that when a child enters the world that the life of the parents are dramatically changed. 

Recently, Robin Quivers of the Howard Stern Show on Satellite Radio described a close friend who spent months in bed just to have her baby. On a resent phone call to her friend she quoted her as saying, “I have not had a moment to myself…I can not even use the bathroom without being interrupted.” She also made reference to this woman wanting to, “throw the baby out the window.” 

To assume that today designates tomorrows outcome is not only short minded, it is ignorant. Of course, not all children with autism are savants. How many normal children will be rocket scientists? Should we count the triumphs of modern society paved way by these savants? With out this most diverse population of genius and savant ness there would still be much we do not know. These “gifts” are products of their autism and their autism did not ruin your life to bring you the advancements you continue to enjoy. 

My perfect point, in my perfect autistic world, and in my perfect way of wanting to be perfect is that there is a place for all of us. We all fit in somewhere. That is the perfection of difference, the perfection of human willingness to conquer challenges and make happiness in spite of the hand and life we are dealt.  

So, in your world you are a writer who can take apart a persons life and describe only the horrors that the particular family you chose to choose these supposed atrocities from. You can have your purgative, but that does not give you the right to disseminate everything you assume as destroying their lives and leave out what is so right with it. 

Of course, it can be concluded that so much is perfect in your world and your family that you can pretend to be an authority on autism. I forgot that I am not the only perfectly autistic person in the world. 

You selectively took the bad things from this woman’s family, the same way that some of us on the spectrum selectively eat only green M and M’s. Does that mean we should too have a test for stupidity and closed mindedness? Are these inherent attributes enough to call for an abortion too? Maybe we should fill hypodermic needles with a cocktail of euthanasia and rid the world of all that you seem to think is wrong with it.  

Of course, that would lead to the total annihilation of the human and animal population but not before we give up our humanity, kill our sense of humors, and perfect what is clearly not intended to be perfect. Only then will autism, stupidity, and closed mindedness be eradicated forever. 

It is our differences that make the world go round.  

In addition, if there is room enough for the short sightedness of a person like you, going about snapping mental pictures in time to later pick apart for your own amusement, then there certainly is room for an autistic woman to come along and pick you apart for my own piece of mind. 

Thank you to all who read this and please know that it is intended for a poor soul who would advise abortion of a fetus who tested positive in utero for autism. Her opinions stem from a far off look over the fence of a friend who is going through some of the most trying times of raising a child on the spectrum. Her attempt to predict the future of this 7-year-old boy leaves everyone he comes into contact with destroyed and unhappy with their live completely ruined. 

Even in light of the fact that advancements are being made in the treatment of autism and that there are varying degrees of autism she would still recommend an abortion. The only other fault of her article was that she left out the possibility that autism is not merely genetic and could have other causes. 

I must say she did highlight some of the most difficult aspects of autism. That it is trying, consuming, and life changing. I hope that I have changed her life. I hope that I have opened her eyes some. 

In addition, as a responsible writer I must admit her article has positive aspects. Being that all sides must be told. One of the most functional parts of her article is that it is bringing both those affected by the spectrum and those ignorant of it together in a large discussion. Thus, the goal of educating others about autism is being reached.  

I would further like to thank her for the last 5 hours that I have spent writing about it. This time is for those on the spectrum, their families, for educating others about autism, and for my own individual advancement as a person. 

I have truly grown.

A savant? Well, actually, that is not a word that could be applied to me personally; although, my own autism has granted me certain “gifts.” 

But if you were to research what a savant is, you would learn that most have severe mental impairments and many have autism. 

The human spirit is a powerful thing, it drives up to achieve and motivates us to aspire to be our best. 

Savants are said to be beyond gifted, have a seemingly unnatural ability or talent, and defy the normal processes for what they are gifted in. 

A child who is non-verbal plays a piano with no prior lessons and can replicate complicated Beethoven music after just hearing it played. 

A man who cannot even tie his shoes can “read” a page in a few seconds, add that information to his photographic memory, and utilize it when telling individuals about the day they were born. 

A young man ostracized as a child has unsurpassed mathematical ability and can calculate in his head what computers are required to do and he can only see the numbers pop into his head with no knowledge of how he can “see” numbers without doing a mathematical problem. 

Literally, there are many geniuses and savants whose mental make up includes autism.   

My gifts may not be savant or genius ability, yet they are what gives me my own connection to the world. My literal voice, sensitivity to the emotions of humans and animals, and my memory that once I have committed it to long term I never forget it are just a few I owe to my autism. 

I call upon the voice to be understood and heard. I tap into my sensitiveness when I need to see past an attitude to help a friend, furry or human. In addition, that memory takes me on real life adventures on just a simple trigger, when suddenly I am there again hearing, seeing, and feeling in the moment that could have been so many years ago. 

Blessed are the ignorant. Blessed are the able. And blessed are the autistics. 

In spite of the challenges faced on the spectrum, every one with autism has been given a unique gift. Blessed with the uniqueness of a disorder that sets us apart from average.