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Autism – to label or not to label, that is the question. Have you been to your doctor about your child and been made to feel as if you were banging your head off a brick wall? Or quite possibly you have been told that a speech delay is common in boys and perhaps mom or dad is just being a bit too neurotic about it? If you have been down this route then you are certainly not alone. In Ireland the consensus now among many in the medical profession is that there is not really an increase in the number of autistic children out there but instead us parents are concocting the symptoms to claim state benefits by unjustly labeling our children.

If you have already been told by a number of people that your child is Autistic and more importantly if you the child’s parent who knows this part of you better than anyone else has an instinctual inner feeling that something is not right then chances are your suspicions are rarely unfounded. Recently a more enlightened member of the medical profession reiterated this fact to me, she said that a concerned mother or father who is ignored by their doctor is doing a great injustice to the child in question. So if you already have an innate belief that your child is different or has issues that need to be addressed then in most cases you are valid in your concerns.

A concerned parent does not want their child to be labeled as Autistic but if their the child does actually have autism then the sooner that this is recognized, faced and addressed the quicker it can be acted on and the better the outcome for everyone in the long run. Any one in the field of psychology, social care or child care will reiterate how important early intervention is for the child on the Autistic Spectrum. But this is practically impossible to access if you are still being told to wait and see, give the child a chance, you are just being neurotic, paranoid and that the child may still talk or perform other social skills when they are ready.

The best course of action on how to proceed in the diagnosis and treatment of Autism is not always easy to figure out. It is undoubtedly an emotionally fraught experience that will leave you drained and confused. However the knowledge on how to best deal with this unpredicted dilemma is best answered by those who are actually on the Autistic Spectrum. The general consensus among people with autism tends to be that if you are autistic then you feel already labeled before any official diagnosis is made or any official autistic title is bestowed upon you. Many children who went through childhood with undiagnosed autism will tell you that they already felt clearly different and were perceived in school and throughout life as being weird, a freak or rather eccentric unless they were told why they behaved the way they did and received the help they needed at a young age.

Experts in the fields of psychology and psychiatry say that ideally Early Intervention for the Autistic child should begin at the age of two. This gives the child the best possible chance of acquiring the skills necessary to interact with the outside world effectively and thus save them from a life time of low self esteem, a lack of confidence in themselves and a myriad of other common complications such as social anxiety issues, depression, alcoholism, drug abuse and anti social behavioral. So consequently being labeled as autistic is a release, a blessing, an awakening and being given an official diagnosis frees the autistic person rather than hindering them.

Any disability is a life altering experience and on interviewing a man in his thirties with ADHD AND dyslexia which remained undiagnosed until recently I asked him, if you had been labeled as having ADHD and dyslexia when you were four or five, would it have devastated you or would it have been a huge relief? He said he would have hugged the bearer of this news and said now I know why I am different and I am going to get the help that I need. A label only appears to really matter to those people who are not on the autistic spectrum. For those people that are autistic then they have already acquired internal labels and scars that have clearly set them apart from the general population whether they have ever been given an official diagnosis or not.

Embrace your autistic child they are no less a person they are just on a different path to you, their mind is wired differently but nevertheless they will always be your child and never let pride, ignorance or bad advice stop you from helping this person from reaching their true potential. We can all achieve our goals in life no matter which path we have to travel on to get there.

“I cannot ‘come back’ and defend myself. I cannot respond to others. This is scary, beyond scary. It is terrifying. Sometimes the words seem to be accessible, but as I open my mouth they disappear. In the presence of another, I instantly forget what I was going to say. This happens over and over. I want to talk, but I forget what to talk about. It feels like I am a blank slate. It petrifies me. People on the ‘outside’ expect me to talk. What am I going to do? Sometimes I watch very carefully to see what would be a good answer and give them back what they want. I am good at this. I feel this is the only way to survive. Survival is becoming my middle name. Who would ever understand that I am a blank slate? When I am alone I am not blank, but in the presence of others, I am. I am a blank slate walking around in a person’s body. Please help me. This is too much for me to know. Who will listen to my burden?“

Let us make sense out of this autistic child’s experience. We can only deduce what is going on within him. He seems to be telling us he has no ability to respond to others and this scares him very much. He says to wants to talk, but in the presence of others, he goes blank. By himself, he is not blank, can form ideas, and probably has feelings. Finally, he feels burdened by this experience and there is a sense of hopelessness and desperation in his writing. We can understand this experience as a lack of freewill and control over his environment.

This child is describing the experience of not being able to express himself as he sees others do. It is a tortuous experience, which he seems to lack the ability to change on his own. I believe it is important to note that this phenomenon is probably going on with others with autism spectrum disorders as well. He is describing how relationships cause him tremendous anxiety and cause him to collapse. He is not ‘falling apart’ because he wants to, but because of his anxiety when in relationship to others.

How can we help this child who seems to collapse when in relationship to people?

Some steps that may be helpful for the child with autism and yourself are

1) recognize that he has the potential to communicate, but the presence of another makes him feel too anxious and he ‘goes blank’ or forgets what is on his mind,

2) he is not going blank because he is willful or difficult,

3) help him to understand that you understand his predicament,

4) help him to become more comfortable with others including you. Until his anxiety is under control he will continue to go blank and finally

5) give him the time and space to talk. Create opportunities for the two of you to dialogue.

Anxiety is something that people on the spectrum are always trying to manage. We need to put ourselves in their shoes. If they lack self-agency and dissociate in the presence of others, which creates an inability to communicate their needs than their daily existence will be one of coping and anxiety management. People in general remain anxious when they do not have a way to self-regulate. ‘Typical’ people talk about their problems with others and hopefully find new solutions to manage a given situation or their anxiety in general. Because people with autism do not have the ability to communicate their feelings, we have to find other methods to help them to self-regulate.

What can we specifically do to help the individual with autism who is anxious? There is not an easy answer, but some thoughts to consider:

1) talking about anxiety in general may be helpful. If the child is nonverbal, speak about how he might be anxious doing the specific thing he is doing. If he does have words, ask him either how he is feeling or interpret what his anxiety might be like. Let him respond to you. It is important to not expect that he will be able to speak about his anxiety, but at least allow this to be part of the discussion between the two of you. By doing this he is acknowledged for how he is feeling and hopefully in turn feels understood,

2) make room for the discussion of anxiety as part of the dialogue,

3) let him have the time he needs to warm up to new situations and not be pressured to comply to others’ time frames and

4) work on developing a relationship with him that allows for mutuality, dialogue and direct expression of feelings.

One of the most common misunderstandings, when it comes to concepts associated with ABA, is the idea of negative reinforcement. This may not be surprising considering the widespread notoriety of positive reinforcement and the natural assumption that they are opposites. Many individuals I have met, who are doing their best to navigate the sometimes complex world of ABA, have insisted that they are actually practicing negative reinforcement when confronted with behavioral challenges. Typically, the conversation includes something to the effect of, “I just couldn’t get him to stop doing that, so I used negative reinforcement and sent him to bed without dessert.” While removing a reinforcer can be a powerful way to effect behavioral change, this is not an example of negative reinforcement.

Negative Reinforcement is defined as removing an aversive stimulus in response to a behavior which then leads to an increase in the likelihood that the behavior will occur again. Let’s break that down – first you need to be removing an aversive or undesirable situation. In the example above, the individual is sent to bed early, which is most likely removing a positive stimulus, i.e. staying up and having dessert. Therefore, that consequence is actually punishing a behavior. This is not necessarily bad or wrong, since the situation and the individual’s history should determine the best course of action to take. The second part of the definition, “…leads to an increase in the likelihood…” involves whatever behavior you want to see more of. Remember that any discussion of reinforcement involves the goal of increasing a behavior not diminishing one (which would be a punisher). Again, in the example above, the statement, “I just couldn’t get him to stop…” infers that he is seeking to reduce a particular behavior, not increase one.

So then, what is negative reinforcement? One of the most common examples of this is the practice of having an individual stand up at the dinner table if they, for instance, don’t eat all of their vegetables. When they do, they can sit back down or be excused. Here, you are seeking to increase a behavior, i.e. eating vegetables, by removing the aversive stimulus of standing up. Notice how the parent created the undesirable situation and is subsequently allowing the individuall to remove it by completing the task. This is important because it allows the desired behavior of eating the vegetables, to be completed as opposed to punishment which often removes the individual from the situation. Ideally, the individual will quickly realize that life is better when they are eating their vegetables and will able to sit down. This is good but the way to gauge if this is an effective technique is to see if they eat their vegetables tomorrow as well. After all, the goal is to increase the behavior, not produce it each time through the use of negative reinforcement.

There are people which convince themselves that if they cannot deal with something surely there must be highly trained specialists who can. These people believe that the specialist can take up where they leave off and fix what nobody can fix. With that theory in mind, they commit the child with Autism and go off to live their ‘normal’ lives.

One of the theories that so called experts have is that children with Autism can not assimilate or respond, basically they just mimic. This is very much like saying children with Autism are broken and can not be fixed.

Have you ever heard the saying, we learn by doing? Even average children, it is being discovered cannot learn unless they are first taught to mimic their parents. It seems all it is, is a different structured brain to do the job.

Another situation to look at is the person that lives a rather dull life, no crime, no arrests, and no tickets. Intelligence seems to be average on above, they marry, have children, and then one day in a normal length of life, they die. This person ends up on the autopsy table and it is discovered this person does not have a brain like everyone else, but instead has a lattice work brain.

Not noodle like or jelly like but like zigzags of tissue forming structure. ‘Potato chip brains’ is the term sometimes used by doctors. I wonder how much prejudice these people would have to endure if it were known beforehand. Again, it seems all it really is, is a different structured brain to do the same job.

No institution can give absolute one on one care and engagement the way a family can. Mainstreaming gives exposure, interaction, societal norms and function. The need for communication is met by family and school.

In school as well as the military it is found out what a person has an aptitude for doing. That is where you start. Children with Autism do not like change but we can many times figure out what they have an aptitude for.

This is particularly true when you take into account that an obsession may be that same ‘aptitude’ that typical people show and look for. At this point what causes the problem whether chromosomes, genes, RNA, DNA is not known. What is more important is dealing with Autism itself.