My little one and autism
Moms View Message Board: Parenting Discussion: Archive January-June 2003:
My little one and autism
Hi everyone. I haven't been on in awhile but have a problem now that I need advice with. I just took Kennedy to another child psychologist and he said that she definitly has many symptoms of autism but a few that contradict that statement. He said that she could possibly progress (acadmically) normally but maybe not. He mentioned medication at a later date if her behavior continues to hurt others. He recommended getting into the public school system's programs. He also suggested me getting her evaluated by a team of specialists. I already have the ball rolling with the school. I don't know what steps they will take with her. The whole thing that is troubling me is that he didn't give me a definite diagnosis. He just validated my concerns that she wasn't "normal". I am getting frustrated because I would just like to know what she has and how we go from here. I am not one who likes to hang in the air. Do any of you have kids with autism or been around children with it? How do you handle certain behaviors? Have any of you been in a situation similar to mine? Any advice/stories would be appreciated. TIA
I have a very good friend who's son was recently diagnosed with aspergers autism. In her son's case, it's pretty mild, and he is very functional, he just has his difficult moments and particular issues. He is in public school and doing well, his mom works very closely with his teachers, and so far, he isn't getting any extra special help through the school system. Autism, especially aspergers, can be really tricky to diagnose, since you have gotten the ball rolling, the best you can do now is learn how best to deal with your child's issues, and try not to focus too much on a particular diagnosis or label. Good luck to you!
Do you have any nearby treatment centres that deal with autism? Not every child has the same behaviours. There are varying degrees of autism. I don't have a child with autism, but I am a Child Development Counsellor/Resource Teacher, and have worked with many kids who do. If you want to chat, let me know, and I can email you privately.
My nephew is 2 and he has been diagnosed similarly he as Pervasive developmental disorder not otherwise specified and they say most likely he is austistic and will get that diagnosis eventually. It was pretty devestating for awhile, and it is still a challenge for them. He is almost 2.5 doesn't walk or talk, he has said mumma and up a few times but not consistantly. He is really smart though, he knows all his colors numbers and letters.( we know this b/c he can do it on some special computer program.) He loves T.V. and swimming. He has very bad night terrors and sleep is a problem. He also has a twin sister who is a typical kid. They get tons of therapies for him speech, OT,PT, even though his dad is a Dr. and they make good money he qualifies for medicaid b/c of his diagnosis, it pays after their insurance runs out. So you may qualify too if you normally wouldn't every state is different as too how much they have for services you may have to go looking but your state should have some type of program here it is called child development services. I think it is good to remember especially now when you are probably overwhelmed with what this all means, that we all have challenges in life and yes, Kennedy's may be more than some people's but she is capable of so much and with autism it is so hard to predictwhat will be. All you can do is be her strongest advocate and get her all the therapies you can. I'll ask my sister if she has any good books or websites.
Also I have no idea of your $ situation but my sister has hired a " nanny " 20 hours a week she is also Max's developmental therapist so he gets really good consistant care and my sis gets help with bed and bath and meals ( he has eating issues) this is separate from what CDS pays for.
My oldest son was diagnosed as "pre-autistic" at about age 3-1/2. He probably would have been diagnosed earlier but the first pediatrician I went to kept telling me I was an over-anxious mother (true) and, for one thing, the ped said he wasn't cross-eyed, he just had a wider than usual space between his eyes. I finally got frustrated enough to take him to an opthalmalolgist, who diagnosed him as severely far-sighted and, as a result, cross-eyed. At age 3 he got glasses because anything closer than 6 feet was a big blur. I immediately changed pediatricians, and found one whose brother, coincidentally, was a child pscyhologist and ran my son through a battery of tests. He started special ed at about age 3-1/2, and continued in special ed until 9th grade, at which point he was transferred to Central High School, Philadelphia's highest academic magnet for boys at that time. He had very little vocabulary at age 3, and this was what his special ed teachers concentrated on first. I was, myself, in the depths of a long term depression for about 2 years before his diagnosis, and as part of his treatment his father and I were to be in therapy at the special ed school, which helped tremendously for me (although my now ex didn't participate very often). At one point we were advised that we would probably have to institutionalize him, but that was out of the question for me, so the special ed was considered a second best choice and one that would only hold off institutionalization for a while. Of course, that was then - thinking about autism and institutionalization has changed a lot since then.
Don probably has Aspergers Disease or a form of it, which is a form of autism where the individual is very intelligent but lacks social skills (which is my Don). He is very, very intelligent, focuses very intensely, almost obsessively on things he is interested in. He is the nicest person in our family. He is absolutely reliable, always responds to requests for help, and invariably kind. He has learned social skills over the years, because his family has helped him to learn why they are important to other people, even if they don't always make sense to him.
He graduated from Central, passed Advanced Placement exams in Chemistry and Math, placing out of two semesters of Chemistry and one of Math, and his Chemistry teacher at Central, the head of the dept., said he was a "natural genius" at Chemistry. He has an exceptional memory (all of the family have exceptional memories but his is really unusual) and easily memorized the entire Table of the Elements and the first 200 logarithms of the logarithim table. He does not read fiction, because "it doesn't make sense for people to behave that way".
He is absolutely and painfully honest, generous, thoughtful, sometimes totally oblivious to human relationships but when he cares about someone he takes the trouble to understand that person very well - for example, the holiday/birthday cards he gets for family members are so "on point" that we don't know whether to laugh or cry, and every blouse or gift he buys for me is absolutely pefect - he says he just wanders through the stores until he hears bells that tell him "that's Mom" (which makes me cry).
He was hyperactive as a child, and at that time the medication for hyperactive children (early 60s) was Valium, which he was given in large doses. I have since been told that this is why he is only 5'8", while both of his brothers are nearly 6 feet tall. He didn't often have temper problems, but often got into trouble because he would focus obsessively on something and would simply not hear or listen to instructions.
When under stress he is subject to severe anxiety attacks and while a student at Drexel (which is a pressure cooker school) came, in my opinion, very close to nervous breakdowns at each final exam period. He attended Drexel for four years and finally dropped out, and was so emotionally traumatized by the experience he cannot think about going back to school. If I had known more then, I would have tried to persuade him to go Temple U. or another less intensive school, but didn't know enough and his Chem teacher urged him to apply to Drexel.
At age 41, his main job is as a biker delivery man for a hoagie shop, but he maintains a web site on lighting and lighting related items (one of his obsessions) and has had a dozen or more consulting jobs and a couple of patents as a result of that web site.
Why am I telling you all this - partly to tell you that a man who was diagnosed as pre-autistic, and was in special ed for many years, is a self-supporting, reliable, intelligent adult who can form relationships, and who is valued by his family and many others. He is absolutely committed to non-violence. And he is an all around nice guy.
I urge you to get whatever reliable, qualified (and well credentialed) diagnosis assistance available to you, and especially to search for a pediatrician who (a) has experience in treating learning disabled children and (b) does not see medication as the be-all and end-all of treatment for learning disabled children. You have some offers of help above, and here is at least one web site I found: http://www.autism.org/
I urge you to be careful of those who offer "easy" methods of dealing with autism, especially those widely advertised as "successful" "alternative" treatments. There is a lot of hokum out there, because parents of autistic children are often desperate, especially those who really want to avoid medications if at all possible, and there area lot of programs offered which are very expensive, not well tested and not generally approved by highly credentialed education or psychiatry/psychology experts. Be warned.
I think you won't get a definite diagnosis for quite a while, if ever. What your doctor(s) are looking at are symptoms and behavior, and we simply don't know enough about all the forms of autism and other learning developmental disabilities to be able to get a diagnosis as definite as, say, measles or diabetes. You are dealing with the human mind, about which we know only a very little, and that makes definitive diagnosis very difficult. And I would not be surprised if some of the treatments and methodologies recommended will be "let's try this and see how it works", rather than "this will do it". Not only do we have little accurate information, each child is different and that child's environment is different, which makes definitive treatment recommendations difficult. It's not like penicillin for strep throat.
I would suggest that you start keeping a detailed diary, if you haven't already, to help you get a better picture of how various stimuli cause Kennedy to react. Some of it may be diet, some may be the way specific people treat her, some may be as simple as her not watching television or not watching certain kinds of shows, avoiding certain kinds of play situations that other kids can handle (like competitive games), the amount of sleep and low-stimulus rest she gets, or even some of the foods she eats. For example, when my son was heavily focused on something he enjoyed I had to give him 30, 20, 15, 10 and 5 minute warnings of when it would have to end and why, and help him start to wind the activity down in such a way that he could come back to it later (like a Lego project or, later, a computer program he was working on) or he would absolutely panic and react to protect his project if I tried to make him end it without a countdown and winding down activities.
And, above all, remember that in the end you know your child better than any of the experts, and if a suggested treatment doesn't make sense to you in terms of your knowledge of your child or the kinds of reactions it produces in her, trust your judgment. In the end, you and Kennedy and your family will be the ones living with what happens, and you are probably the best experts of what is working and what is not.
I hope this helps.
We had our child seen by a developmental psychologist.
I don't know if anyone but the developmental psychologist can diagnoise autism.
Now a days everyone is afraid of being sued which is why you may be having a problem getting a diagnois by your doctor. I was told this by the speech therapist and the special ed teacher.
There is a special test which the developmental psychologist gives your child to see if she is autistic or something else.
I don't know how accurate the information I gave is. It is just my experience. Best wishes.
Nicole, I am going through the same type of thing as you. I know my son is off a little, but not sure exactly why. We actually are starting on Monday with the medical evaluation. We did have him evaluated by the school and he is in the sp needs program there ( he is 4) and I can say that this year he is a different kid. They know exactly how to deal with him and it is just amazing to watch. I will try to email you in a bit.
Here are some more austim web sites:
http://dmoz.org/Health/Mental_Health/Disorders/Neurodevelopmental/Autism_Spectrum/Support_Groups/
Some had message boards which might help.
Here is a active message board that looked nice:
http://www.network54.com/Forum/118931
I am just listing these for you for additional information.
thank you so much Feona and everyone for the help and links. they are much appreciated.
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