Is the Autism Label Stuck?
Getting a diagnosis and a name for your child’s condition is extremely important. It will help you understand why your children do what they do and it can often point you in the right direction for assistance. At the same time, we must remember that our children are not their disorder or condition. They need to be kept separate.
Sometimes labeling hinders us. We think that our children might not be able to do things other “typical” children can do and that type of thinking can keep your children from succeeding.
Learn all you can about your child’s condition. Knowledge is power. Then seek treatments that sounds right to you and learn the tools to best help your child grow.
Allow the name and the label to disappear. Once you know what your child has you no longer need to refer to it except in an IEP, classroom, or doctor’s appointment. You do not have to make excuses for your child having autism or any disability.
We did not find out Brandon had autism until he was thirty-two years old, only seven years ago. Looking back I have to ask myself if I knew my son had autism, would I have allowed him to live his dream of independence? Maybe I would have not let him go and grow independently. Maybe it would have stopped me from allowing him to advance. I now know fifteen years later that would have been a terrible mistake.
Brandon loves being independent and living alone, although it has not been easy. He is determined to make it work and has for the past fifteen years. It is quite beautiful to watch my son continue to grow, develop, and want to change.
What I find very exciting is that Brandon has grown more in the last year than he has over the past ten years. Maybe it is the culmination of all those years combined. I don’t know but it is truly wonderful to see.
When parents see maturation in their children, they become energized and it helps to motivate them. It is empowering for both the adult child as well as their parents. Many of the professionals believe that when our children reach a certain age they will not see much, if any maturation. I say that is not true. Not only has my son continued to grow but many of my client’s adult children are continuing to develop as well.
No one knows what the future will bring it is a huge questions mark. If that is the case, we might as well think positive.
For those autistic adults who want to be addressed by “autistic adults” they have a right to make their own choices. For me I describe my son by saying he has autism, epilepsy, and learning disorders or he is an autistic adult for teaching purposes only. At all other times I refer to him as my son, Brandon.
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@Jonsmom01 – This may seem like it wanders, but bear with me. I don’t think anyone expects blind people to get jobs driving trucks. This is unrealistic and dangerous to both blind and sighted people. That is not the point of inclusion. The point of access and inclusion are that people with disabilities are not denied the ability to attend things that their disability by its nature does not prevent them from doing. So walking up stairs is out of the question for someone who can only use a wheelchair, but that should not exclude them from entering or going to any floor of a multi-story building.
This applies to autism too. I too was dragged to pep rallies, and I hated them too, and by the end I was usually unable to interpret speech and had a headache. I had no problem with being allowed to do something else while the whole school was in one room shrieking. It took a few months, but we got the school to exempt me. People with disabilities also have the right to avoid situations that would be hazardous to them because of their disability. But, if someone with autism wanted and was able to attend something noisy, you’d need a better reason than their diagnosis to forbid them from going. I was able to change, while the shrieking stayed the same, and voluntarily attended some similar events. Still didn’t like it, but the point is it was an option.
I hope this helps you to understand that the point is not to make you feel guilty.
I appreciate both points of view, both the original post and the comment from the mom with a child who has more severe autism. Autism is a spectrum disorder, and there is a wide range of behaviors. Every child is unique. I recently thought my 22 year old son had Asperger’s Syndrome, and got him tested. The diagnosis came back with 3 other disorders, but nothing on the spectrum. But getting him tested opened the door for support services. He is high functioning and I want him to be able to reach his full potential without labels defining who he is, but attaining his highest potential means getting him help to cope with those issues that are holding him back. But I appreciate the suggestion that I not label or make excuses for him. I needed to hear that. Thanks!
I appreciate your comment. It was well written and well taken.
I have to say a couple things. The first is one that you alluded to but I think it needs to be stressed, getting a diagnosis not only points you towards the right direction for assistance but is essential for getting the services your child needs. Having no diagnosis limits the autism relevant services in the states Birth to 3 program and public schools.
The second is just my opinion. Please do not lay a guilt trip on those that live with severe autism. As much as I would love to leave my son’s diagnosis at the IEP, classroom, and doctors office doors, it is totally unrealistic. With severe autism his behavior not only stands out for the world to see but has profoundly changes the way we live. After 9 years of living this way it seems normal and I am not complaining. I am not shy and when my son is stimming away in a grocery store and I see the clerk staring or when they say hi and he totally ignores them or if he starts slapping the counter with enough force that everyone in the store can hear it, I tell people he has autism. Depending on my mood and the amount of effort I need to gain his compliance, I might explain more. I don’t see it as making excuses, but helping people to understand. There are events that we can not take him to that were a major part of our lives. My husband is a high school cross country and track coach. My son cannot handle loud noises and will melt down when people are yelling. So going to sporting events, even those as out in the open as cross country and track is difficult and I have to keep him away from the crowds. I find my self explaining to parents of my husbands athletes that I am not able to attend all the meets and or have to stay away from everyone. Large family get togethers are a lot of work and we often choose to not go or one of us will stay home with my son, because he does not gain much from going and it is just not worth the work and we can not enjoy the company when he is there.
So I do not need those in the autism community living with higher functioning autism telling me to act like he does not have autism and include him in everything that the rest of the world does. Too often on these blogs and even in the support groups parents living with high functioning autism make comments that alienate parents like me. I find myself thinking they have no clue. Of anyone, we in the autism community can and should understand each other. I get enough guilt trip from one of my well meaning family members.