I Think My Child Has Autism: What Do I Do

If I just learned my child had Autism there are two things I would start to work on immediately. The first is getting a good evaluation. Even if your child is young. The second thins I would do is start working on early intervention services right away. I would do this no matter what any one else thought.

A good evaluation is sometimes hard to get. Typically parents take their child to the pediatrician. There are many pediatricians that still will tell parents to wait. My suggestion is to trust your gut. Although doctors are more and more taking parents seriously trust your gut. Try another doctor.

You can also contact your local Parent Training and Information Center or your local Autism Society and ask. Although they will not tell you which doctor to go to they can give you a list of local or some what local doctors. Keep asking and looking until you are satisfied. I am heart broken when I bump into parents who have known there was some type of problem for years and did not get answers.

If you think your child has autism or any delay and is three or younger start looking for help at the same time. You should call your state’ public health system or Mental Retardation/ Developmental Disabilities System. As much as I hate the term Mental Retardation, it is a specific medical term that will get the attention of medical personnel. They can hook you up with your state’s Early Intervention system. It is called different things but keep looking and asking.

They will do their own evaluation and start needed therapies. Even if you are wrong and your child is just a slow starter they will be able to help. Insurance or Medicaid can help pay for this. Remember look for free or inexpensive services first.

If your child is over three call the education system in your area. They can do a free evaluation. It is a process but keep at it. If they provide services they can do it free of charge.

Time is of the essence. Get any therapies your child qualifies for as quickly as possible. Be as diligent as you can about getting them there or being available. There is much, much research behind the theory that children with autism or any other disability will benefit from early help.

Four Basic Rules of Social Engagement for Children with Autism

Children with Autism have little ability to navigate social situations but with a little work and reinforcement they can learn some basic rules. Social manipulation is even harder so should be avoided at all costs. Children with autism do not have to be the same as typical children. And I would not want my child to be like a typical child. She would lose qualities that I love about her. Anyway Four Basic Rules:

1. Keep your promises or do not make a promise. Do not promise if you can not do it or even if you are not sure you can do it. If the promise is to keep a secret do it. The only time to break a promise is if someone is going to die. Then you must tell.

2. You may not think anyone is uglier than you, dumber than you, or anything like that. You may not guess why someone is doing something and hold it against them. Even if you know you must stay away from the situation. You may not make fun of someone.

3. Be thankful for everything you get. Someone worked hard for the money or stuff you get. People go out of their way to do favors for you. Repay your favors many times over.

4. Do not make trouble. Do your work. Once again keep your promises. Do what you do well. Do not break the law or the rules. Other people may follow you

Yes I realize all these rules are easier said than taught. We automatically do it with typical children. We just have to take a more direct approach with children with autism.

Autism and Social Skills Accounting

Stephen Covey talks about a model that may be helpful to parents of children with autism. The model involves imagining that social interactions are like deposits into and with drawls from a bank.

It is of course not as easy as just talking about deposits. We also need to talk about the deposits being what happens when a child does something that the other person sees as a benefit. The important part here is that the other person has to see it as a benefit whether the child with autism does or not.

Deposits can be large or small. Ideally we want to teach our child to make the largest possible deposit with the smallest effort so as not to wear them out. There are many ways to make the most of a deposit.

Some deposits are just large because they are a huge help. A huge help for a child may be help studying for and passing a test. Small help for a child might be holding a door.

Some deposits are large because you were not expected to help. A good description of this might start with the explanation that it is expected that your mother or father will help. It may not be expected that a child help another student. Therefore the deposit is considered larger or worth more.

Also it is important whether someone asks your child for help or your child volunteers. A child who volunteers to help will get a larger deposit. This is an important technique to explain to your child with autism as it will encourage your child to look for ways to help.

An important idea to talk about is something that has nothing to do with the size of the deposit. It is where you start in this process. If the child with autism starts making with drawls with a typical child, that child will expect your child to continue to make with drawls. Of course the opposite happens. If your child starts by making deposits then the typical child expects deposits.

So now, what is our child going to do with these deposits? Deposits might be used as a way for our child to get out of activities and still be friendly. Sometimes we as parents may not even know how the deposits are being used by our child, but just by the nature of autism they will get used!

Good Grief! Dominoe, Autism, and Money

We finally have had to come up with some limits in the Dominoe buying clothes saga. She wants to buy clothes EVERY day. Then she tantrums when I say no. With her little autistic self!

Anyway know she can only buy clothes once a week.

She wants me to get a ‘card’ for her now. Oy veh! I’m going to have to think about this….

Social Skills Training for Children with Autism Part 2

Social Skills Training for Children With Autism

Once again it is up to parents to implement social skills training for children with autism. In the first part of this series we learned the three stages of acquiring some level of friendships. In this part of the series we will look at a term called Social Accounting.

Social Accounting is done by typical adults on an unconscious basis. Because children with autism do not pick up the social skills naturally we have to in some way quantify what many of us do automatically. Some of us even employ Social Accounting openly. We all know the office person who has a list of who contributes to parties and birthdays and who does not. Ideally there should be four steps in the Social Accounting process for children with autism.

The first step is to give free chances to every new child our child is trying to get the attention of. The thoughtful process is to give that child a certain amount of time say two weeks or a month to get to know our child. During this time we need to talk to our child about giving the other child free chances to try to get to know them. Your child should ignore gossip. In the process of getting to know your child other children are going to say or do things your child might assume is hurtful. During this free chances stage your child will assume these things are a mistake or a misunderstanding.

The next step is for your child to help the child in question in some way. An alternative is for your child to give the child in question something such as a small toy or snack.

Third you want your child to start using one of the two or three skills they have developed to start carving out a place among the other children. Teach your child to use their skill to make the others happy.

Finally your child with autism must not worry about the other children giving him favors. At this point your child will be a ‘good will ambassador’ to other children. Your child also needs to be careful to spread his help around evenly to other children. You and your child need to look for skills they are so proficient in that it will not take your child a lot of time to help. The goal is to make progress in your social skills training. .

Social Skills Training for Chilren with Autism Part 1

Unfortunately one the things parents will find themselves doing is trying to teach their child social skills. Remember this is the same child who sees the world in black and white. It is possible, but parents need to remember that the trick is to use those quirks of autism to their benefit.

One of the ways to use the quirks of autism to your benefit when raising a child with autism is to teach them rules. If you can teach them a rule which will ‘fit’ into their black and white version of the world you can have some measure of success. Initially you will need to teach 3 stages of meeting people and becoming some level of friends with people.

The first stage is the “Do I want to know this person?” stage. Adults have learned over years that making a good first impression is critical. This is not always the case in social skills training for children with autism. Your child may be able to make a good first impression and then not be able to keep the impression up through the other stages. Initially we should teach our children not to make a bad first impression.

The third stage is the stage that children try to figure out how the other person might be useful to them. This can be a conscious or unconscious process. As parents we need to get over the feeling that this process is self serving or calculating. Our children need us to teach them in black and white terms that they can understand. The child with autism will spend their time better cultivating a variety of skills that maybe helpful. Preferably with your help they can cultivate two or three areas they really like.

The third stage is the stage our children actually form the different levels of friendships. We need to teach our children that typical children will form closed groups. We should make every effort to teach our child with autism to stay away from becoming a member of a group. Our children should do their best to remain friendly enough with all of the groups to be able to get regular invitations to join them in an activity but not become a member.

Dietary Considerations and Communication for the Person with Autism

Surprisingly one of the things parents tell me may help a person with autism is monitoring and adapting their diet. Of course not all people with Autism will benefit from restricting some foods but the possibilities are worth looking into.

The explanation is that some foods turn into opioid peptides when digested. These opioid peptides then can cause problems with normal brain functions. This is especially significant when you look at research showing 70-80% of people with autism have very high levels of this substance in their urine.

Cow’s milk and other milk products have casein in them. Casein is one of the foods that change into opioid peptides when digested. Casein is also added into other products so be sure to check the labels! Wheat and grains have gluten in them.

Once again gluten is one of those foods that seem to give people with autism problems. This includes breads, pastas, some snacks, and the list goes on. It also takes a long time for gluten to completely work out of a person’s system. You should plan on trying it at least 6 months before you will be sure you are seeing improvements.

Although we did not use it, some families have started to use gluten and/or casein free diets. Some families have done it with the entire family and have noticed improvements in all of them. Parents, including Jenny McCarthy, have described improved eye contact, less stomach problems, less anxiety, clearer speech, and improved behavior.

One of my children takes medication for behavior problems associated with people who have autism. Although we do not like a lot of medication it was important to controlling some of her aggressive behaviors. I continually review the reasons she is taking a medication. It is also important to our family to look at whether it is working or is still working. Over the years some of the side effects have been more of a problem than what the medication was supposed to help. That was a whole different conversation with her doctor. Just like gluten free or casein free diets, medication is not the answer for everyone.

Introducing Applied Behavioral Analysis for People with Autism

One of the treatment options for people with Autism is Applied Behavioral Analysis or ABA. I know parents who have paid for ABA therapy and spend time doing ABA therapy with their child. They seem to be quite satisfied that their child has been taught to be compliant in the process.

ABA is based on some of the same beliefs as Positive Behavior Supports. The theory is that desirable behaviors can be increased with rewards or in the case of ABA with our reactions. And the reverse undesirable behaviors can be reduced by rewards or reactions.

The behaviors which ABA concentrates on are literacy, educational skills, social skills, communication skills, and daily living skills. The daily living skills includes motor skills, food preparation, personal care, cleaning, time, money, and work skills. ABA uses an individual approach developed for each child. Each skill is taught in very small steps, like dressing might start with putting on socks. ABA is typically done by therapists or trainers and by parents. It is at least a 40 hour week.

Some people are opposed to ABA because they believe it teaches children to respond like a robot. But as I said parents who I know who have learned and taught ABA love it. Another problem with ABA is that because it is so time intensive it tends to cost a lot. Some parents have found tips to help with this problem but even then there are costs involved.

More Dominoe, Autism, and Money

So now Dominoe wants a pair of shoes. I tried really hard to convince her to wait till tomorrow after work to go get shoes. She was insistant.

I could tell by the look on her face and the way she looked out of the side of her eyes….She had enough today.

Finally she said if she waited they (the shoes) might be gone!

I told her if she pitched a fit in the PCAs car they would come home without shoes. I told her if she pitched a fit (we call it a floor show) in the store they would come home without the shoes.

She got her shoes.

Although I am excited she has finally figured out she has to have money. Now what? She cant spend like this forever.

What to Look for When Helping a Person with Autism

People working with people who have autism need to understand how behaviors are a form of communication. Tantrums and meltdowns are not just willful behaviors. Sometimes they are the only way a person with autism can express themselves. People especially need to understand this within the framework of positive behavior supports. An additional need is to plan for repeat problems. People need to look for usable strategies and techniques to teach social skills to people with Autism.

Specifically people should look at enjoyable socialization methods so people with Autism may experience success and the desire to build skills. Social deficits affect life at home, school, and eventually in the workplace. People need highly beneficial strategies that can be used across a variety of settings and routines. The strategies should be practical and effective solutions to assist ‘typical’ people. The strategies should also assist people to become more understanding, accepting and engaging of those with social difficulties.

Part of behavior management strategies is the process of building a relationship on as many levels as possible. Then within the context of the relationship people with and without Autism can work on collaboratively solving problems with behaviors. It also includes doing whatever possible to avoid power struggles.

Another part of behavior management for people with Autism is to build social skills. This should be done with formal lessons on social skills. A social skills training program should also teach strategies for the person with autism to be able to generalize the skill from one situation to another.

At the same time a person with Autism needs social skills training, a typical person needs sensitivity training to better be able to work with an individual with Autism. People can use a variety of ways to practice both the social skills and the sensitivity, such as lunch buddies, peer buddies, and class buddies. Other techniques to be investigated with a person with Autism are conversation skills, cooperative play skills, emotion management, understanding others’ feelings, and dealing with teasing.

Dominoe, Autism, and Money

or a long time I have known that Dominoe does not have any idea about money. On the other hand she always surprises me….

She came running into the living room yesterday morning. She says you only gave me five dollar.

Let me explain. I don’t cook. I give her spending money from her check everyday to eat and buy stuff she wants. When she runs out of money I give her money anyway.

Well, I told Dominoe no that was her regular amount of money. She says but I want to buy another jacket. Yesterday, she came home with a matching jacket and pants.

It was time to investigate. I went to the PCA and asked where the money had come from for the jacket and pants. This PCA is young and they go to young people’s stores. Remember Dominoe is 21 now. Anyway the PCA started laughing. She said they had seen the clothes and Dominoe had told her(the PCA) she wanted to get them. The PCA told her that she did not have enough money. The PCA tells me (laughing) that when they got home Dominoe started pulling a dollar from here and five dollars from there. Dominoe kept asking if that was enough!

You see I usually give her enough money to get up to a certain amount each day. So if she has extra money I just put enough to get her to that amount. This has been going on for years and years. I am just tickled to death that she decided to hide her extra money.

And yes I gave her extra money for the jacket she was after. (So much for the budget.)

7 Tips for Raising a Child with Autism...and a Promise

Tip 1 - Changing the Environment - When we have a child with autism many times we spend time looking for the reasons why a behavior may be occurring. In the process of looking for reasons we sometimes overlook the easy solutions to the problem. One of the solutions is to change the environment to meet the child’s needs.

Tip 2 - Look for Free Services – A parent is going to use every resource available to help their child. They need to stop and take a breath. It takes extra work to look for free resources but this will help preserve their insurance for as long as possible. Insurances have caps that may limit the amount of services. They also have co pays that can figure into a formula that determines how much help your family can get.

Tip 3 – Is the Behavior the Result of Their Age or Their Disability- Many times parents are discouraged because they believe a particular situation or behavior will go on forever. If you have older children you might be able to compare where this child is in the process of growing up. If you do not have older children ask someone who does! As a matter of fact you may want to ask someone anyway. It helps to consult with someone who has a little distance.

Tip 4 – Is It Reasonable or Fair- If you run into a situation or a decision you think is unfair say something. Your child has no one else but you. You have to stretch out of your comfort zone and say something.

Tip 5 – Do Not Give Up – Everyone becomes discouraged at times. You can do this. I know many mothers who never thought they could and they are doing it. They are raising a child with autism are all the time.

Tip 6 – What Other People Think Does Not Matter – My child has melted down in a grocery store and a restaurant. Of course I thought about all the people who looked at me disapproving or even made comments. It is easy for people who do not know what is going on to judge. Sometimes I explained and sometimes I didn’t. And it was OK either way.

Tip 7 – Not All Children with Autism Are Alike – Sometimes what works with one child does not work with another. Along this some thought sometimes one thing works with one child with autism and sometimes it does not work with the next child. That is just the way it is.

And the promise – Your child with autism will make you the person you will become. You will be stronger, smarter, and more creative than you ever thought possible.

Having a Blog Is Interesting

I write what I like here.
It makes me happy.
I wonder if anyone reads it or cares?
I love being a mother.
Especially Dominoe’s mother.

Discussing Autism Types

There are many autism types. When people typically think about autism, they think about people who are non verbal or people who have savant like abilities. Athough these are two types are important autism types there is more to it than this.

Autism is considered a spectrum disorder. What this means is that people on this spectrum can be at any point. Some have speech and some only have some speech. Many people with autism have conversational and public speaking abilities.

It is a disservice to think that people with autism are all one way or another. Just as many people with autism have savant abilities as not. Those abilities can also be in a variety of subjects.

To further complicate the topic of autism types is the problem of co occurring disorders. Disabilities like ADHD and cognitive disabilities can complicate autism. Another complication that can make a person with autism seen to have more problems is sensory integration problems. If the sensory integration problem is severe enough the person with autism will seem to be unable to communicate. This is because of the pain they experience in what we consider a normal day.

Hopefully you can see that autism types is a complicated subject. Whether autism, aspergers or pervasive developmental delays is important to people as a more definitive diagnosis. Then of course knowing and understanding the co occurring disorders is imperative.

My 15 Yr Olds Post About Autism

Another name for AUTISM is Pervasive Developmental Disorder (PDD). PDD is the same thing as autism but in a more proper language. Pervasive Developmental Disorder (PDD) is a name for all kinds of autism.
Autism seems to affect more on boys than girls. The reason it affects more boys than girls is not yet proven. Stuff like family income doesn’t usually affect a child with autism.
One symptom of autism is pretend play. Another symptom is social interactions. A third symptom is verbal and non-verbal communication. Another is repeated bodily movements. One other one is if they show unusual attachment to an object.
Have you heard of the MMR Vaccine? Well I have, and most parents believe it causes autism in children. The only proof parents have is around the time the vaccine was given autism increased tremendously. Doctors think it was only a coincidence that it increased around that time but parents seriously don’t agree.
There are a lot of different treatment options for different types of autism but I’m just going to name a few. One is medication. Two is (ABA) Applied Behavior Analysis. Three is Occupational Therapy (OP). Four is Physical Therapy (PT). The last one I’m going to name is Speech-Language Therapy (SLT).
Medicine is used for a lot of things but I’m only going to name a few. One is mood swings. Another is tantrums my sister has them a lot. Another is outburst. Another is sleep difficulties which my sister has a lot and so do I. One other one is anxiety. One last one is Hyperactivity which me and my sister both have.
Complications can be caused by a few things which I’m about to name. One complication can be caused by Fragile X Syndrome. Another complication is Mental Retardation or some people call it a mental illness. The last complication I can think of is Tuberous Sclerosis.
Autism is been proven to be inherited by other family members. Take identical twins for instance if one has it so will the other. Which is really sad because they both have to have the same everything in every way? The risk of having a second child with the same disorder is very low but it’s possible. So watch it carefully.
Autism can improve over time with treatment and age. With some kids it might not though. With some children modifications have to be made because of the illness. But others get at least a little bit better over their life span and some get all the way better.

Is a Blood Test for Autism Necessary?

I ran across an article about the Autism Genome Project. The article is from the middle of 2007. Dr. James Sutcliffe is one of the doctors working on DNA samples from families with two or more members with autism. At the time they were hoping to be able to come up with a blood test that could predict IF a child would have autism. The article talks about the families’ urgency in developing this test.

It reminds me of the mothers who come into our office. In the past few years we have had several mothers who come in who are pregnant and have been told their child will have Down Syndrome. They have been offered an abortion. We give them information. In at least a couple of instances the mother’s have called months later and did not have a baby with Down Syndrome. I guess that is my first concern. That in the effort to know we will in effect throw the baby out with the bath water.

My second concern is about getting rid of all of the people in the world who are different. I have realized now and in years past that my experience with my daughter with autism is different. I enjoy the differences. Yes we still have the bad times. The barking that went on for almost a year. The evenings spent holding her head so she could not slam it on the floor.

Anyway I did experience all of these things, but I also experienced joy. The joy of seeing her do things that took her years to do compared to other children. The fun of figuring out the way she thought about things. The joy of seeing her face light up.

I am the woman I am today because of her. My concern is that if we had a blood test for the possibility of autism, we would miss those things and become a further intolerant society. So what might be next? A blood test for people who might have asthma or how about diabetes……

Autism Symptoms?

I have heard many people over the past twenty years ask about ‘autism symptoms’. At different times the question has struck me differently. I suppose most people are expecting me to come out with a list of five things they can use to look at whether a person has autism or not. If only it were that easy.

Most people do not realize that the symptoms of autism can vary widely across children and adults. The symptoms also change depending on other characteristics of the child or adult we are talking about. Usually we are looking at three main areas concerning autism: social interactions, relationships, and behavior. Unfortunately it is not even that simple, as the severity of each of these areas can be different.

Relationship problems are talking about the ability to connect. To connect with parents, siblings, and friends is what seems to be sometimes the most disturbing part of autism. At least at first, that is what I and other parents I know have experienced. Social interactions or communication is an on going autism symptom that is particularly troubling as time goes on. My daughter got speech therapy all through school and sometimes besides what she got at school. It was hugely important in our family that she be able to communicate on whatever level she could. Then the behaviors, this is probably the biggest autism symptom I hear about once a family gets over the initial surprise at the problems with connecting.

Of course each one of these areas can be involved in various degrees. I hear professionals who are usually not parents talk about mild, moderate, severe, and profound as the levels of severity. At first I suppose I was a little offended but these four levels at least give you a frame of reference.

This description is probably just the start of all the things that come to my mind when I hear someone ask about the autism symptoms. Some other areas I will try to cover at a later date are the ages you might see symptoms, the different characteristics which will make a difference, why it is good to talk about autism symptoms, and why you might not want to wait for a doctor to identify autism.

Update on Breaking the Car

I really do have a good relationship with the provider company that supplies my daughter's DSP/PCA. They have agreed to pay for a psychological and the psychologists time to help with a behavior plan. The state system to get the psychological has not done one since 1997. They are also so backed up right now. Did I mention that the provider company is so good!

Autism Symptoms and Technology

Autism is one of the harder disabilities in which you can identify technology. So I have a list of different types of technology that seem to help in some way. Or at least seem to help mitigate one or more of the autism symptoms.

A piece of information that I have run across lately is a different type of keyboard. It isn’t exactly a keyboard. It is more like a video game controller. The person with autism uses it to cut out the confusion that people with autism feel looking at a typical keyboard. It is also used by people with physical disabilities.

This piece of equipment is called an OrbiTouch keyboard. A human-factors engineer named Pete McAlindon of a company called BlueOrb developed it. You can look at the article here

Brain Stuff and Autism Symptoms

I keep reading interesting articles like this one
http://www.newkerala.com/nkfullnews-1-102815.html . The articles talk about different areas of the brain that do or do not ‘light up’ when different situations presents itself. Usually the situations that are looked at are situations which highlight one of the many autism symptoms. This one in particular is about personal space and the different part of the brain, in this case the amygdala, which work. The amygdala works quicker when another person gets close, close enough to make us uncomfortable. In people with autism this does not happen. Even when people get nose to nose too close.

I keep reading articles like this and find them interesting for a couple of reasons. The first one being that we can tell which areas of the brain are used in different behaviors. I just find that interesting. The second reason I keep reading being that if we can tell which areas of the brain are not responding, when will we be able to use the information to make a diagnosis?

I remember years ago thinking that there must be more to it than this. You go to a doctor, they ask you a few questions about when or if your child does things, they look at a list of autism symptoms and then the doctor tells you a diagnosis. It just seemed like there should be more to it than that. But there wasn’t. There was no blood test or anything else. Of course they took blood but that wasn’t it. Anyway I keep reading these types of articles and trying to understand…