PKU and Autism, Too

Carson was diagnosed with autism on April 2nd, which happened to be World Autism Awareness Day. Very fitting. For those of you already wondering, there is no known connection between PKU and autism, and even if there was, his PKU is well-managed enough to not cause any significant damage to his brain. I think he is just a genetic Wonder Boy. We already know he is special, now he must be super-special! I would love to see a statistic of how many people in the U.S. have BOTH PKU and autism. I bet it's not many.

I know everyone out there probably has many other questions, so I will try to anticipate some more of those in this first blog post. Also, there will be many changes to come. Changes in our family life and to this blog. I have decided I will be changing the title because it's not just The PKU Life anymore, and hasn't been for a long time, really. Any suggested titles are welcome!

I already answered the first question most people will probably think of or ask, and that is about this being related to PKU, for which the answer given to us by the numerous professionals we have seen is a resounding "NO". They knew we would ask that too, so we didn't have to ask. Some of you may wonder, then,

What causes autism?

Everybody wonders that, because there is no definitive answer yet. "We don't know." There is some evidence of genetics, but at this time it is not belived to be exclusively genes that cause it. Researchers believe it is a combination of genetics and some environmental factors. I feel, just from my own reading and understanding, that genetic research may not be advanced enough to tell that there might be some deeper reason that some people with the genetic mutations exhibit symptoms while others do not. It could be due to environmental factors, I think it could even be lack of oxygen during childbirth, or it could be something we just haven't discovered yet about genes or the brain. That's complicated stuff, and it would be arrogant to think we know everything there is to know about the human body (remember when people thought the earth was flat?) The point is, nobody knows yet. Oh, so another big one is:

Do I think autism is caused by vaccines?

NOOOOOOOOOO!!!!!!!!!!!! For some reason, I get irritated when people ask this and I try to argue a point with them. From what I have read, that was a study from a British journal that was later retracted because of lack of evidence, falsifying information, etc. Everyone is entitled to their own opinion, and that's just what it is: an opinion. There are no " hard facts" to back up this theory. In terms of worldly things, unless I am shown VERY compelling evidence or solid hard facts that something is true, I am not inclined to believe it just because any certain group in the general public does. I have not had one single medical or psychological professional say to me they thought this was the case. I say, prove it. I try not to just go along with the hype, the current theories that the pop culture seems to take off and run with and have everybody scared. Some people will argue that their child showed no symptoms until they got a certain shot, and then it was like a "light switch". Coincidentally, signs are not obvious in child development differences until those ages when vaccines are usually given. In my experience with Carson, he was my first child, and now that I have another child, I realize how many signs Carson showed since he was old enough to do anything. I have NO reason to believe it was a vaccine. I think he was born with it. I know this may hurt the feelings of some people I know, but I am just a hard sell, I guess. Like I said, everyone has an opinion, and that is mine until further notice.

Will he "outgrow" it?

This is one of my favorites. I get that about PKU a lot. NO, PKU is a genetic disorder and he cannot "outgrow" it. He will need to follow a special diet his whole life in order to live to his fullest potential and avoid cognitive (brain function) problems. As for autism, it is also most likely that he will struggle with his difficulties throughout his life. However, receiving proper therapy can help improve symptoms and help him learn to manage them, which may make him seem "better". Carson has mild symptoms and many, many strengths, so he has the potential to overcome most anything. I am very hopeful and optimistic about his prognosis.

Does he have to take medication for this?

At this time, the answer is NO. And it probably will be no for a very long time, if not always. I will not submit to giving Carson any medication unless it seems absolutely necessary to his well-being and the well-being of those around him. Carson is no more violent than any other 3-year-old boy, and probably even less so than most typical boys that age. He is a very loving and sweet thing. He is very hyper, but he can also have incredible focus at times. Right now, he exhibits a great eagerness to learn new things, a focus and determination to complete tasks, and a perfectionism that causes him to get frustrated if everything is not exactly right. I think therapy, and accommodating his best ways of learning, are the best medicine for him right now. But I also am a realist and I know as he grows up he will change and face many bumps in the road to come. I hope he does not have enough difficulty to cause him to need any medication in the future.

Will he have to go to a special school or get special education?

Most likely, no and yes. Carson has NO cognitive delays; in fact, he is very intelligent. He has known how to say and read the whole alphabet and spell his name since he was 2. Currently, he can name all the sounds, spell a few simple words, and write all the letters and numbers. He can count to 49, the highest so far. He has an excellent memory and sense of direction. He is currently expected to be able to integrate into a regular classroom at school with therapy and other interventions, if needed. He will have an IEP (for those of you not involved in education right now, that is an Individualized Education Plan. It lists things that all people involved in his education can see and know what his needs are to help him function and learn in the classroom). That alone qualifies him as receiving "Special Education", but does not mean he will see a special teacher. However, that could happen too. We just won't know until we get there. Being proactive and starting him soon in a preschool setting with other children is the best step we can take right now to help him transition into school with fewer issues. I think Carson will love and thrive on the routine, but at this point it looks like he may have trouble following rules and getting upset when things get changed up in the routine. He LOVES people, and other kids especially. He is so interested in them and wants to interact and play, but kids his age are starting to far surpass his social abilities. He wants to play with them, but he doesn't understand how to reciprocate their conversation or do the things they want him to do. Unless, as I have said many times this week, he is with a bossy little girl who just tells him and shows him what to do! That is the best thing for him right now! LOL I have been told that Maggie will be his best therapist!

Those are all the usual questions I can think of right now. Feel free to comment if you have any other questions for me. This is new to me, even though I have read much, I have just scratched the surface of all the information out there about autism. I am only at beginner status here, so I welcome any comments giving me information I can find or advice...please!

I consider myself a strong advocate. I have 12 years of experience advocating for senior citizens, and now I get to apply those skills to advocating for my children! I joked that since Carson was diagnosed with autism on April 2nd, I felt behind already because Autism Awareness Month started April 1st! The advocate in me just couldn't help it. So the last question I will answer is:

How do I feel about Carson's diagnosis?

This has been a long time coming, so I have had much time to deal with my feelings. When we started to realize Carson was different, I felt much of the same sadness I felt when he was diagnosed with PKU. I had read about PKU only a tiny bit, and it was so rare we knew nothing about it, so it was scary at first. Now that I have had time to live with it, I understand it. But with autism, it is not as rare as PKU, so there is a lot more information out there. I read a lot and had figured that it was a possibility long before he was ever actually diagnosed, just because many of the symptoms of autism sounded like Carson. I now understand these are not death sentences. They are, however, life sentences, most likely without parole. However, I know we have and will use all the tools available to make sure Carson has the best life possible, and the possibilities are endless! He is such a bright boy and he is blessed already by all the people who love him and take care of him and want to see him succeed. So I feel thankful. I'm thankful that we have such supportive and loving family and friends to help us along this journey, either directly, or indirectly by just being there to listen. I'm thankful that God gave me the brain and the heart to help me learn and have the desire to help Carson. I feel relieved that we have an answer for something we had trouble explaining in Carson's behavior. I feel blessed, ten thousand times ten thousand, to be the mommy God chose to raise this special boy. It is a struggle, at times, to deal with the PKU and autism, too, but it's worth it, for the things we will learn and the things he will learn in life: strength, endurance, patience, tolerance, determination...and I wouldn't have it any other way.