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Diagnosis?
I have a question that no one can give me a good answer to. I took my son to see a developmental pediatrician that specializes in ADD. I figured he could point me in the right direction for what to do with my son, if nothing else. I found the appointment to be very unproductive. He did acknowledge that my son has some characteristics of autism, but he did not want to give him a label of autism at this time. I figured he didn't think that my son was severe enough for a label. He also mentioned that he didn't want James to end up in a classroom that would not be very good for him. James is verbal and affectionate with his family. The problems are that he lacks peer relationships (or what little a 2 year old can have) and pretend play. He is very smart though. Basically with the concerns, he just told me to work on them with his therapists. On the billing sheet he gave a diagnosis of receptive language delay. So I got nothing and nowhere at that appointment.
A couple of weeks later I got a copy of the chart note. In the chart note, the doctor did put "mild pdd" as the diagnosis. Should this mean anything to me? Well, first of all, I'm wondering if pdd is actually a valid diagnosis. I've read in some websites that PDD is not actually a diagnosis. But then other websites equate PDD with autism. So I'm confused about that. Second, does this mean that he is actually mildly autistic? He's usually pretty manageable, but he does have his moments. I think he is, but I don't know if this backs me up. Help!
A couple of weeks later I got a copy of the chart note. In the chart note, the doctor did put "mild pdd" as the diagnosis. Should this mean anything to me? Well, first of all, I'm wondering if pdd is actually a valid diagnosis. I've read in some websites that PDD is not actually a diagnosis. But then other websites equate PDD with autism. So I'm confused about that. Second, does this mean that he is actually mildly autistic? He's usually pretty manageable, but he does have his moments. I think he is, but I don't know if this backs me up. Help!
It is very important that you understand the special educational needs law in your country/state. The doctor will not necessarily know what they are. In the UK a label of autism does not automatically mean a place in a special school. Infact the opposite is true. They try to keep these children in mainstream school even if they are failing because they don't want to have to fund more special educational places and the therapies and support that these children need. Special schools cost money, and the rate of diagnosis if escalating and no new schools are being built or set aside for children on the spectrum.
At this point you don't know which type of schooling would be most suitable for your son, so you need to know what your options are and how you would get a place in which system you deem best. In the UK there is mainstream, enhanced resource (which is still mainstream but with expertise and extra resources), and special school. There are limited places in enhanced resource and special schools.
Don't worry about joining things that 'maybe' irrelevant. Your son may be on the spectrum, maybe with some attention or focus issues which maybe down to autism or ADD or ADHD. It is very common for children to have traits of different disorders and for their diagnosis to change. At the support group I go to there are children with severe autism, autism spectrum disorder, aspergers, ADHD, bi-polar, tourettes, learning difficulty and some of the children are a mixture.
At this point you don't know which type of schooling would be most suitable for your son, so you need to know what your options are and how you would get a place in which system you deem best. In the UK there is mainstream, enhanced resource (which is still mainstream but with expertise and extra resources), and special school. There are limited places in enhanced resource and special schools.
Don't worry about joining things that 'maybe' irrelevant. Your son may be on the spectrum, maybe with some attention or focus issues which maybe down to autism or ADD or ADHD. It is very common for children to have traits of different disorders and for their diagnosis to change. At the support group I go to there are children with severe autism, autism spectrum disorder, aspergers, ADHD, bi-polar, tourettes, learning difficulty and some of the children are a mixture.
Thanks so much for your comments! I'm not worried so much about a label for my son. I think my husband is having a harder time with this diagnosis. James was being particularly difficult a few nights ago, and my husband asked me if he had ADHD. I think that for now we're just going to have to wait and see how he develops. He's in an Early Intervention program for speech, play, and fine motor skills. When he turns three, he will go to a preschool for children with various developmental delays. He's not guaranteed to go there, but more than likely he will. I won't find out until closer to his third birthday. I think the doctor feared that a label would get him into a class with autistic kids who are more severe than him. The preschool doesn't work that way, but I didn't know that either.
I am interested in joining my local autism society, and I wanted to make sure, too, that I wasn't joining anything I shouldn't be. It would be nice to talk with other moms in my local area that know what I'm going through.
I am interested in joining my local autism society, and I wanted to make sure, too, that I wasn't joining anything I shouldn't be. It would be nice to talk with other moms in my local area that know what I'm going through.
Regarding PDD it just means pervasive developmental delay. That means there are difficulties, some of which are characteristic of being on the autistic spectrum. PDD can also be used for children that don't quite meet other diagnosis such as ADHD. If you think of autism as being on a range from very mild to severe then this diagnosis says he is at the milder end of anything, but it is noted that there are difficulties.
Regarding supports and therapies, the milder the disorder the less available they are. Children with Aspergers find it harder to get any supports because they are verbal and usually do okay academically. However they can have language processing problems and can take language literally and be concrete thinkers.
At this stage they are saying your son has receptive language problems and difficulties with imaginative play. This will have a big impact on the classroom because the teacher will be giving out verbal instructions and talking throughout the lesson. If your son does not understand what she is saying or what he is supposed to be doing he is going to find it a very stressful and anxious time.
Outside of the classroom he will also struggle during playtime and dinnertime because he won't have the social skills to chat with other children or join in their games. He may not understand their imaginary games or he may want to play the same game in the same way over and over.
If he is at the milder end of the spectrum he may have some understanding of his own difficulties as does my son, and this can lead to low self esteem. My son will ask me 'what is wrong with me'. It can be heart breaking, that is why your son will need to be in an educational environment where they have all kinds of supports such as 'circle of friends'. This is something where a group of children are chosen to be buddies with your child and they will try to include him in games at playtime. For example my son will join in games if asked, but he doesn't know how to ask to join in.
Your son is only 2, but it will become more clearer where his difficulties are as he grows up. For example he may want to join the soccer team, like my son did. But after a month it was very clear that he did not know what he should be doing, and he was very fearful of physical contact and after the warm up exercises he would follow the lines on the pitch or sit down pulling up the astro turf. He had no desire to get control of the ball or score a goal. I don't think he had any understanding of what a team or team game was. So we stopped that and joined trampoline club. That was a success.
Regarding supports and therapies, the milder the disorder the less available they are. Children with Aspergers find it harder to get any supports because they are verbal and usually do okay academically. However they can have language processing problems and can take language literally and be concrete thinkers.
At this stage they are saying your son has receptive language problems and difficulties with imaginative play. This will have a big impact on the classroom because the teacher will be giving out verbal instructions and talking throughout the lesson. If your son does not understand what she is saying or what he is supposed to be doing he is going to find it a very stressful and anxious time.
Outside of the classroom he will also struggle during playtime and dinnertime because he won't have the social skills to chat with other children or join in their games. He may not understand their imaginary games or he may want to play the same game in the same way over and over.
If he is at the milder end of the spectrum he may have some understanding of his own difficulties as does my son, and this can lead to low self esteem. My son will ask me 'what is wrong with me'. It can be heart breaking, that is why your son will need to be in an educational environment where they have all kinds of supports such as 'circle of friends'. This is something where a group of children are chosen to be buddies with your child and they will try to include him in games at playtime. For example my son will join in games if asked, but he doesn't know how to ask to join in.
Your son is only 2, but it will become more clearer where his difficulties are as he grows up. For example he may want to join the soccer team, like my son did. But after a month it was very clear that he did not know what he should be doing, and he was very fearful of physical contact and after the warm up exercises he would follow the lines on the pitch or sit down pulling up the astro turf. He had no desire to get control of the ball or score a goal. I don't think he had any understanding of what a team or team game was. So we stopped that and joined trampoline club. That was a success.
As your son is 2, there is alot of development that goes on at that age relating to social communication etc. Infact all infants demonstrate some 'autistic' behaviour because that is typical for their developmental age. But as the grow they learn these language and social skills that those with autism/aspergers have difficulties with or don't learn at all.
From the discussion and diagnosis he has been given, it sounds to me like he is on the spectrum (as he has a speech disorder) and problems with receptive speech and social interaction.
Regarding getting a 'label'. All professionals are individuals themselves and they will have their own thoughts on what they think is the most useful diagnosis, if any, for a child. Some think that a label stigmatizes a child. Some think that a diagnosis is imperative to get all the supports the child needs. The fact is that everyone is labelled in some way. So I wouldn't be afraid of any 'label'. Please remember that any diagnosis does not have to be written in stone. It is true that if he is diagnosed as autistic and he remains within that diagnosis criteria then his diagnosis cannot be revoked. But I cannot see a circumstance where you would want it revoked if that were the case. If he is diagnosed and then improves considerably, his diagnosis can be changed and in some cases children lose a diagnosis altogether. If that did happen you could find yourselves in the situation of many other parents who are fighting to keep a diagnosis because they don't think their child will cope in school without the supports.
Please remember that a diagnosis usually means that the state has to pay you/your child benefits, they have to provide educational supports and the correct educational place. You may not have access to some of these things without a diagnosis, but you need to check that.
At his age having difficulties with social interaction is less of a problem than when he reaches pre-school and school age. By then he needs the supports in place to be able to learn how to communicate and interact with his peers. That may mean he needs a place in a mainstream school with support, or a mainstream school that has alot of experience and other children on the spectrum, or it may be a special school. At this stage you don't know where he is going to be then. But you need to know that there are always limited places for children that have special needs and by the time it is decided that he needs a place all the available places could be gone.
My son is diagnosed as being autistic. He goes to a mainstream school that has alot of experience of autism/aspergers. He is in a class of 18 children with one teacher and 2.5 teaching assistants. He has frequent speech and language therapy. The school has a very good grasp of autism and have given him verbal communication cards that are clipped to his clothing eventhough he is verbal because sometimes, when upset, he cannot speak. They have dinnertime clubs such as lego and play doh. They let them take in a toy to school and he can play with it when he has finished his work. They have a social communication club where the children are taught social skills. There is a quiet room he can go to if he gets very upset at school. All these things were not available at his previous school. And there were no places at this other school for my son, but I took the education authority to an educational tribunal and they have now agreed that he needs the 'enhanced resource' place in that school.
It is very hard at the beginning of the journey of getting a diagnosis. To begin with any hope that your child is not autistic is something to hold on to. But you may find, like I did, that it would have been better to have pushed for a diagnosis and got the support as early as possible because all of the therapies are more effective during their formative years.
So I would try to find out what therapies/supports/nurserys/schools etc you will have access to with a diagnosis of mild PDD. If there is a difference then say that you want a positive diagnosis so that everyone knows what they are dealing with and say that you understand that he may have his diagnosis changed or revoked if he improves significantly.
I am not sure what he meant about ending up in a classroom that was not good for him. I presume you do have 'parental choice'. This means that even if your child is quite severely autistic, if you prefer them to be in a mainstream school then that can be arranged. Whether it would work or be effective is another matter. I don't think that getting a diagnosis of an autistic spectrum disorder automatically excludes you from the mainstream school system, it certainly doesn't in the UK.
My son is also verbal and affectionate with his family, but those skills are not used within a school environment. And that is the place where all children with autism have the most difficulty. Getting the right school is absolutely crucial, and I would advise that you start visiting nurserys and schools to get a feeling of how they support students with autism and ask them how your son would get a place there. I would recommend getting in touch with a local parent support group because you will get alot of information and advice from them. Find out where their children go and why. You usually find that there is one school within each district that has a cluster of children on the spectrum because they are the only school that has the experience and supports to meet these childrens needs.
Does that make things any clearer?
From the discussion and diagnosis he has been given, it sounds to me like he is on the spectrum (as he has a speech disorder) and problems with receptive speech and social interaction.
Regarding getting a 'label'. All professionals are individuals themselves and they will have their own thoughts on what they think is the most useful diagnosis, if any, for a child. Some think that a label stigmatizes a child. Some think that a diagnosis is imperative to get all the supports the child needs. The fact is that everyone is labelled in some way. So I wouldn't be afraid of any 'label'. Please remember that any diagnosis does not have to be written in stone. It is true that if he is diagnosed as autistic and he remains within that diagnosis criteria then his diagnosis cannot be revoked. But I cannot see a circumstance where you would want it revoked if that were the case. If he is diagnosed and then improves considerably, his diagnosis can be changed and in some cases children lose a diagnosis altogether. If that did happen you could find yourselves in the situation of many other parents who are fighting to keep a diagnosis because they don't think their child will cope in school without the supports.
Please remember that a diagnosis usually means that the state has to pay you/your child benefits, they have to provide educational supports and the correct educational place. You may not have access to some of these things without a diagnosis, but you need to check that.
At his age having difficulties with social interaction is less of a problem than when he reaches pre-school and school age. By then he needs the supports in place to be able to learn how to communicate and interact with his peers. That may mean he needs a place in a mainstream school with support, or a mainstream school that has alot of experience and other children on the spectrum, or it may be a special school. At this stage you don't know where he is going to be then. But you need to know that there are always limited places for children that have special needs and by the time it is decided that he needs a place all the available places could be gone.
My son is diagnosed as being autistic. He goes to a mainstream school that has alot of experience of autism/aspergers. He is in a class of 18 children with one teacher and 2.5 teaching assistants. He has frequent speech and language therapy. The school has a very good grasp of autism and have given him verbal communication cards that are clipped to his clothing eventhough he is verbal because sometimes, when upset, he cannot speak. They have dinnertime clubs such as lego and play doh. They let them take in a toy to school and he can play with it when he has finished his work. They have a social communication club where the children are taught social skills. There is a quiet room he can go to if he gets very upset at school. All these things were not available at his previous school. And there were no places at this other school for my son, but I took the education authority to an educational tribunal and they have now agreed that he needs the 'enhanced resource' place in that school.
It is very hard at the beginning of the journey of getting a diagnosis. To begin with any hope that your child is not autistic is something to hold on to. But you may find, like I did, that it would have been better to have pushed for a diagnosis and got the support as early as possible because all of the therapies are more effective during their formative years.
So I would try to find out what therapies/supports/nurserys/schools etc you will have access to with a diagnosis of mild PDD. If there is a difference then say that you want a positive diagnosis so that everyone knows what they are dealing with and say that you understand that he may have his diagnosis changed or revoked if he improves significantly.
I am not sure what he meant about ending up in a classroom that was not good for him. I presume you do have 'parental choice'. This means that even if your child is quite severely autistic, if you prefer them to be in a mainstream school then that can be arranged. Whether it would work or be effective is another matter. I don't think that getting a diagnosis of an autistic spectrum disorder automatically excludes you from the mainstream school system, it certainly doesn't in the UK.
My son is also verbal and affectionate with his family, but those skills are not used within a school environment. And that is the place where all children with autism have the most difficulty. Getting the right school is absolutely crucial, and I would advise that you start visiting nurserys and schools to get a feeling of how they support students with autism and ask them how your son would get a place there. I would recommend getting in touch with a local parent support group because you will get alot of information and advice from them. Find out where their children go and why. You usually find that there is one school within each district that has a cluster of children on the spectrum because they are the only school that has the experience and supports to meet these childrens needs.
Does that make things any clearer?
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