Our family experience with the Asperger / Autism Spectrum/ Medications/ Intervention/ Therapy as well as Key Words / Resources for research.

Hi everyone:)

Why am I writing this? To give you some background on my experiences and hopefully some connections to possibly make in your own life. Do not be surprised if you find Autism in your own family. Those *quirky* people may not just be quirky after all. Autism is close to being an epidemic. Autism is more common than cancer, it effects at least one in every 150 births, is the fastest growing developmental disability and it is quite common for adult family members to get answers and diagnoses on themselves once their children have done so.

I am not going to waste a lot of room on what Autism is. You can google so many wonderful sites to help with all of that. I  mainly want to share some of our experiences, some tidbit facts and what we have found to work for us.

Ebay forbids outside links so good key words to use on google are:

Autistic Spectrum, Autism Disorders, Co-morbid Autism, comorbid, Asperger Syndrome, Autism IEP, Autism IDEA, Teens ADD, Teens ADHD, Spectrum Disorder Therapy. Adults Autism Adults Aspergers, Autism Therapy, Autism Schooling, Asperger Schooling, Autism Facts, Asperger Facts, ADD ADHD Facts, Pervasive Development, PDD, PDDNOS, Autism Girls, Asperger Girls, etc.

I will be writing another guide soon geared at IDEA federal laws and the IEP school process. Feel free to email me anytime for help.

A little background on our experiences:

I am a mother of four children, three on the Autism spectrum. My oldest daughter {16} was first diagnosed with Attention Deficit Disorder {ADD} six years ago but recently diagnosed {Dx} with PDD = Pervasive Developmental Disorder Otherwise Non Specified. ADD in girls can look quite differently than in boys. PDD is a fairly new area and as she got older, her social issues became more clear and caused more problems.

My 13 year old son was diagnosed with Asperger Syndrome, Obsessive Defiant Disorder {ODD} Obsessive Compulsive Disorder {OCD} and Attention Deficit Hyperactivity Disorder {ADHD} over six years ago.

The third child, second son, is 11 and has a severe ADHD DX but will be upgraded to PDD when the tests have been finished as well. As school gets harder, more signs of problems began to show. The youngest does not have a DX but there is definitely traits in him as well.

Causes of Autism?

In case you do not know; the Autism gene has been found to be highly genetic . I know now that my ex husband of ten years; their father, is on the spectrum. This realization put everything into perspective and made me sane again. Once I divorced and got the proper care for my kids and myself, all the emotional abuse and turmoil from the years really started making sense. I now realize why their father behaved as he did. Unfortunately the man is now 46 years old, very respectable looking and acting, two BAs from a local high regarded university, goes to church every weekend, does not do drugs or alcohol, but is living with an old friend of my mom's, making $10 an hour at a local chain store with no car. He simply cannot make life work. I am sure his life would have turned out very differently if he had the proper intervention. He still refuses to believe there is anything *wrong* with him or his kids. Nice to know I am not crazy after all these years:)

I am sure you have heard many stories regarding people believing their child's immunizations caused their child's Autism. However; my kids were never immunized at an early age due to their father's religious beliefs. While immunizations and mercury can be a catalyst, it is not necessarily a cause for everyone. Obviously; by the fact that people have been immunized with the same shots for decades. Yes, we do have more Autism cases, but we are also better now at naming Autism Spectrum related issues.

The Autism spectrum can encompass many traits. However; co morbid DXs can be quite common. Autism does have its quirks but don't be to quick to think your child's other behaviors are part of the Autism. Severity of the problems should easily guide your medical professional into a proper diagnoses and intervention. But finding a good doctor with a long history in the Autism field can be like searching for a needle in a haystack. Different issues can mean different treatments. It is vital to have a doctor well versed in Autism spectrum disorders. I know, easier said than done.

How are we handling life filled with Autism?

Our journey through the Autistic world came about in a round about way.

Having worked with Autistic teens and young adults in my later teens, I had a sense of what Autism was. But, the face of Autism has changed drastically since the head banging, no eye contact or verbal ability we saw so much of in the 1980's. When my Autistic son was little, I had hints that we had a child who was different. His father simply viewed him as brilliant.

I look back now at photos and can clearly see it. The patterned crayons, the constant playing of the hair, which was a stemming action, the blocks so neatly stacked, the alphabet so perfectly laid out. He was reading by the age of one, he was writing "Walt Disney Home Video Productions" on the sidewalk in chalk in proper Disney font by the age of two. The list goes on.

After my separation and free to be able to find out why my son was the way he was; I saw a leading area neurologist and had him diagnosed. My six year old son went into this room twirling a piece of string with one hand, playing with his hair with the other hand, clicking songs in the back of his throat that made him sound like a 10 piece - one man band, crawling on the floor spinning under the examination table, piling up dust bunnies, making no eye contact or conversation with the doctor. We left with the diagnoses but  I received very little support and no medication help at the time so my search for Autism intervention continued.

At the same time I noticed a growing concern with my third child who was now about four years old. I always noticed how he was impossible to get to bed, but it got worse and worse. He was also a thrill seeker and it began to worry me.  I made an appointment with my pediatrician due to his behavior. I had no knowledge of ADHD, etc at the time. But I remember waiting in the office and seeing a magazine with the words ADHD on the front. I picked it up to waste time and began to cry. When the doctor came in and asked what was up, I simply showed him the magazine and said "This". Little did I know my pediatrician of the past 6 years was the ADHD specialist in my area. He sent me home with a couple of books and told me to call back when I was done. While reading the books, I found a section on ADD in girls...and another cloud opened up to sunshine...THIS WAS MY DAUGHTER!

Things began to make sense ..I quickly called him back. Since we had a long history together and he knew I was now a single mother with four kids; he did not make me waste a bunch of time on questionnaires, etc. He gave me a lot of knowledge and tips to help at home and school and a prescription for Adderall; the same medication that did wonders for his son and so many other patients.

I could not get my son to take the little blue pill so I found mixing it in juice would work. I mixed the juice, left the room to go get him, came back and found the juice gone, within one minute. Needless to say I was quite upset and called the pediatrician immediately. He assured me the dose was small and in no way should harm the son that took it, just keep an eye on him.

Well, what had happened was my Autistic son; who always wanted to eat constantly. had drank the juice. I now know he wanted to eat all the time out of stimulation. I was so used to having to  dress him, transition him into everything, etc that I went on normal about my day and made a transition comment about getting dressed in 15 minutes. 15 minutes go by and I call him to get dressed. I hear "I am already dressed mom." He came to the door and he had dressed himself head to toe in clean clothes and shoes. I was shocked. I immediately called the pediatrician who told me to call the neurologist. I could not get an APT for a week but I told the doctors I was keeping him on it so they could see the difference. A week goes by and we go into the neuro office. My son has not clicked his throat for a week, he has not asked to eat all day, everyday for a week, he is not spinning string, he is making more eye contact and actually answering questions. He goes in, sits in the chair and waits for the doctor. The doctor comes in, says hi, my son says hi back and shakes his hand. He continues to sit in the chair and wait. Needless to say; that is when I saw my son blossom.

Adderall was given to three of my children. I immediately saw a major difference in all three. Yes, it did interfere in sleep and wanting to eat. But the benefits enabled my Autistic son to be mainstreamed in school and lose the extra weight he gained from eating so much. After time the eating became normal and all are normal in the weight and height range. To this day; all my kids stay honor roll and score grades higher in all their testing. They get compliments from every teacher and are doing wonderfully. We tried a few medications to see if we could get a perfect mix, but always went back to the Adderall. We have been using Adderall XR for over 5 years now without anything negative things to say.

Now, I know medication can be a touchy subject. Yes, medication does not work for all. But I do know what has happened in my family and families around me who have seen the same things in their children as well. There are transition periods, risks, etc. But the fact remains; if your child was diabetic, would you not give him insulin? If your child had cancer would you not consider a proven effective medication?

These meds have enabled my children to be who they truly are. The medications saved my family and my sanity. I encourage everyone to please properly pursue every avenue without turning up your nose before having the knowledge to make a good decision. 

The medication has enabled my kids to live more normally on a day to day basis, give them self esteem, help them concentrate, do well in school, stay out of trouble,  make good decisions, pick good friends ..........be themselves. Why would anyone deny their kids this opportunity? The meds continue to help the kids get out of the therapy what is needed to continue on the proper path to a healthy, independent life without the common backlash of self medication through other illegal drugs, alcohol, etc...and they are simply happy..

The combination of proper medication & proper intervention can make the healing begin.

Besides using the Adderall XR;

My Autistic son has been seeing the same social therapist who specializes in spectrum kids for about four years now. They are groups of 8-10 with like minded kids who work on different social strategies and problems. We have seen amazing changes in him over the past four years due to these groups. He also sees her bi-weekly for personal sessions. He has a full IEP and is mainstreamed into a junior high, going to six different classes. His issues are a daily commitment and we are a long way off from where we want; but we never thought he could get this far in mainstream society. We also volunteer as often as possible for different Autism studies and research projects with the Davis Mind Institute. He tests college level and has a genius IQ level. He is an Alta Regional client and gets service help through them. Since I cannot link outside of ebay, you can do a google search for Alta Regional to see if you have a chapter in your area or email me and I can point you in the right direction.

My daughter is in a high achieving independent study program and goes to social therapy weekly along with group outings to a local teen center for backup social help. She also volunteers for a local animal rescue and park with animal care. She passed the High School exit examines in 10th grade with the highest score her school had ever seen.

My third son is an honor roll 6th grader who tests at high school level. He is a little Pokemon master but is a joy to be around.

When my children were diagnosed I made the decision to quite college and find other venues for income. I knew I needed to be home for the school phone calls, doctors apt, etc. We have been collectible dealers for years now and it has enabled me to stay home. We limit video games and TV to one hour per day. We limit social events to occasional things. Too much Girl Scouts and baseball was too much stimulation to stay on an even basis. We do not allow sibling spouts to escalate and insist on a *treat others the way you want to be treated* attitude at home and in the community. We pick our battles. My full time job is being available for my kids and their needs. We are very blessed. We recently had company for a week and they could not believe how calm our house was. We still constantly have issues to deal with, everyday has its own surprise.........but I know in general our kids are doing very well.

I can't seem to get anywhere!

The Autism road can be a long haul. It is not easy and can be quite emotional. Just remember, Autism has a million different faces and what works for one child and family, may not work for another.

It is common to feel services are hidden. I truly found Alta Regional through a seller on ebay who was selling a book on Autism. For every 1000 doctors who says they know about Autism, maybe one truly does. The school systems barely know anything about the IEP process or what the laws automatically grant you, and the whole experience can be a nightmare. Just please know that this is common. Keep searching, keep making contacts, you will find your answers, you will.

You are not alone in your quest and there are many that feel your pains and joys. I certainly hope my scaled down personal experiences have helped in some way. There is always so much to add and very little room. I hope to be adding more soon. Feel free to email at any time if you have questions.

If you have found this to be informative, please click the guide as 'helpful' 

Thank you and take care.:)