Almost every time I speak anywhere the one question that is constantly coming up is why is it important to get a diagnosis? If FASD is still not recognized in the DSM then what is the difference if anyone gets a diagnosis? Well here is the thing there are a multitude of reasons why a diagnosis is important. First if we were to only look at it from a scientific view in order to honestly figure out how prevalent this disorder is we need to know how many people are affected by it. In order to get funding for research or for any interventions it is important to know prevalence. So this is a pivotal point.
The next important reason would be that in order for everyone to understand why certain behaviors happen it is important to understand the cause. I find this is important for both the caretaker and for the person affected. Know matter how positive we try to be with our children they still get negative messages and them understanding a bit about themselves does help. I remember when we read to D, our son who was about 6 at the time, a book about living with FASD the first thing he said was “you mean it isn’t my fault? I am not stupid?” I was absolutely floored that throughout his little life the message he was getting was that he was somehow at fault. We did everything we could to keep things positive but truly he didn’t get diagnosed until he was 6 and we had gone through a lot of other diagnoses and therapies by then. It was really hard for him and us as we tried to find what we were supposed to do to help him. In the end we learned what we needed to do was love him and accept him. To teach him that he was a worthy person and that while he may have to work harder or do it differently he can still do it.
The next reason I guess is that without a diagnosis I feel that proper services are not implemented and proper supports aren’t put in place. One of our younger children was diagnosed at birth but the doctors were afraid of what the birth parents would say if they told them. So it was just noted in his chart but was never dealt with with the family. They took him home and were dealing with a baby who was quite literally dealing with detoxing. He was irritable all the time and the parents had no supports to deal with this. They were not helped with their addiction issues either. No one looked into the fact that the mom had no support or help and was in a hotel room all day alone. She did not understand the arching, screaming, no sleeping, etc. that is so much a part of FAS children. Within a couple months of her taking him home she became so enraged she shook him and threw him into a wall. He is forever damaged by the lack of education and support in this case. Looking back there were so many times when there could have been a different outcome to this story but I guess we all know that hindsight is 20/20.
I know that a lot of people say that if we tell our children that they will have a “crutch“. I guess to me that is not true. If you allow it to be a crutch then perhaps it will become one but see I don’t ever allow that. My daughter R tried one time to use it with me. When asked why she was the only child who had not managed to get her room clean she began to cry and say well “I have FAS mom and so I just cannot do it.” I looked at her and gave her a big grin and said “Wow…well that would work R but see all the kids have FAS. They got theirs done.” She stomped her foot and went and cleaned her room. So I guess it could be a crutch just like having diabetes could be if it was used that way but it sure doesn’t need to be.
I don’t know if I have made a good enough argument here. In the end it is up to each family how they deal with this. Do they get a diagnosis? Do they share the diagnosis with their child? We all need to decide this for ourselves. I do know as long as FASD is a diagnosis with blame attached it will never be sought as often as it should be.
Tonight I pray for all of the families who are loving someone who is affected by Fetal Alcohol Spectrum Disorder. It can be a hard road but it can also be a very special road too.