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Hi, I am writing a paper on AS and was wondering if anyone would be interested in answering some questions that I had. I am really interested in learning about people's experiences with AS and the impact it has on individual and their family and thought that this would be a great place to come to learn more. I will list some questions below but feel free to add anything else!


1) What did you know about AS before your child was diagnosed?

2) When dealing with the doctors who diagnosed your child, how did you feel? How was the relationship between you and the doctors? Your child and the doctors?

3) Did the doctors and yourself share the same view of AS in terms of diagnosis and treatment?

4) As parents what are some of the struggles associated with having a child with AS? How have you been affected personally in relation to having a child with AS?

5) In terms of the law and disability rights what is your view? Have you taken advantage of the assistance available in terms of his/her schooling and/or medical treatment? Is there a need for more assistance?

6) Have you encountered any economic problems as a result of your child's treatment?

7) What would you like others who have little knowledge about AS to understand about?

1) We hardly knew anything about Autism before our son was diagnosed with Aspergers.

2) Our local children's mental health team diagnosed our son. A referal was made to them from our son's school not the doctor (we live in the UK). I knew our son was different even when he was a toddler. I researched children's behaviour online and came to realise that he probably had Aspergers. The Psychologist confirmed my thoughts! Our relationship has always been fine.

3) We shared the same views. There has never been any discussion regarding medication, and at the moment I would not consider that route.

4) Our son used to prefer to play on his own, so would seem odd. He now wants to play with the other kids, but they don't want to play with him. He does not read body language and does not notice when others are fed up. He does not like sitting close to other kids at school, and makes silly noises sometimes. He has sensory issues that often result in him hitting teachers at school, running away. This can cause problems with relationships for us as parents with the teachers, and other parents. As a Mum I constantly feel as if people are pointing their finger and whispering about our son behind our back. Some parents avoid talking to us because of our son.

5) We have received a lot of assistance, and are happy. We have attended a 10 week course on ASDs. Teachers at school have been trained. Books have been provided.

6) We have not suffered any real economic problems. We do pay for 1:1 swimming lessons for our son, as there is no way he could attend group classes!

7) That often ASDs are hidden, and not immediately obvious. An ASD child can sometimes appear normal, with normal speech, mannerisms, etc, but have social, emotional, and behavioural problems. Some ASD kids have special talents.

1. absolutely nothing
2. the first doc that dxed my son didn't dx him with aspergers. that doc made us feel stupid, and even wrote in the preport that my husband seemed uninterested . the 2nd doc was much better. both docs treated my son ok
3.the first doc didn't believe in aspergers.....the second doc did, and our views were pretty much similiar
4. most of the struggles have revolved around pre-dx issues~not understanding why routines had to be kept, why son thinks so literally, why son is prone to misunderstand others' intentions. .....as far as how its effected me~ takes a whole lot of patience and understanding. every day. 24/7. this has been hard.
5. as far as the law goes...well, son does recieve services outside his regular school district in a therapeutic school . this has saved his life. there hasn't really been a whole lot more assistance, as son is high-functioning.
6. economic problems~yes....couldn't ever find any doc that would take insurance. this means that the evals have been paid for out of pocket. his therapist also doesn't take insurance. big problem with insurance companies being fussy about the way charges are put in by providers........we've put our medical expense on our taxes, though.
7. what i'd really like people to understand is that my son has aspergers~he is not purposely rude or self-absorbed....he doesn't always understand what you're saying. and he often misinterprets what you say.......he just wants to be treatd with respect

Thank you both for sharing your experieces with me. I really appreciate your help!

1) What did you know about AS before your child was diagnosed?
I had heard that it was "high functioning autism" and that some famous people had it. I took a couple of on-line tests "for" E because he was exhibiting a lot of autistic traits but was clearly social and verbal

2) When dealing with the doctors who diagnosed your child, how did you feel? How was the relationship between you and the doctors? Your child and the doctors? I have a good working relationship with E's pediatrician, and felt comfortable with her "rule out" approach. I was less comfortable with the neurologist, because I kind of felt like she was asking me to pick a diagnosis, and then she would sign off on it

3) Did the doctors and yourself share the same view of AS in terms of diagnosis and treatment?
No. The neurologist felt that E could be "cured" if we sent him to enough specialists: OT, PT, psychotherapy, behavioral therapy...she even wanted a classroom aid although E isn't delayed at school

4) As parents what are some of the struggles associated with having a child with AS? How have you been affected personally in relation to having a child with AS? Sometimes it feels like every hour of every day is a struggle as E tries to figure out his place in the world. I think the hardest thing to deal with is the tantrums when he gets....misaligned.

5) In terms of the law and disability rights what is your view? Have you taken advantage of the assistance available in terms of his/her schooling and/or medical treatment? Is there a need for more assistance? I don't know that I can answer this one. E doesn't have any needs that we can't meet right now. Knowing the state of other public assistance, I would assume that there is much room for improvement.

6) Have you encountered any economic problems as a result of your child's treatment? No.

7) What would you like others who have little knowledge about AS to understand about? First and foremost, I would want them to understand that being overstimulated is not the same thing as being a spoiled brat, in spite of how it looks. I would also want them to know that families with AS children don't necessarily see their children as "deficient". Some of us think our AS child is absolutely fabulous, and only want a little extra space to help him be his best self.

1) What did you know about AS before your child was diagnosed?
I knew about nonverbal autism

2) When dealing with the doctors who diagnosed your child, how did you feel? How was the relationship between you and the doctors? Your child and the doctors?
I kept hearing over and over again, it's not autism. It's not autism. It turned out to be autism. I felt like the doctors let us down by not picking up on the problem earlier.

3) Did the doctors and yourself share the same view of AS in terms of diagnosis and treatment?
No. I was told to get speech therapy for him and, maybe, some OT. I had more than one professional tell me that it's not really autism, since he's verbal. They tried to take the minimize the diagnosis, even though my son has significant social deficits.

4) As parents what are some of the struggles associated with having a child with AS? How have you been affected personally in relation to having a child with AS?
I've encountered so many people/professionals who recommend discipline for my son. As if he is the product of bad parenting. I wish people would understand that my son gets more parenting than most children and tons of social training. He is not always capable of complying though.

5) In terms of the law and disability rights what is your view? Have you taken advantage of the assistance available in terms of his/her schooling and/or medical treatment? Is there a need for more assistance?
Public school was a nightmare.

6) Have you encountered any economic problems as a result of your child's treatment?
Yes, I can not work as much as I would like. I homeschool.

7) What would you like others who have little knowledge about AS to understand about?
People with AS have all the same emotions as NTs. They love other people. They are not robots. They might misread social situations, but they are intelligent. My son has a very creative imagination and the best sense of humor, but those traits aren't on the Aspergers checklist..

1)What did you know about AS before your child was diagnosed?
Nothing!

2) When dealing with the doctors who diagnosed your child, how did you feel? How was the relationship between you and the doctors? Your child and the doctors?
I felt fine, I was relieved to finally have an answer as to why my son behaved the way he did. My relationship with the doctors was good, my son liked him fine, but was mostly indifferent to him.

3) Did the doctors and yourself share the same view of AS in terms of diagnosis and treatment?
yes

4) As parents what are some of the struggles associated with having a child with AS? How have you been affected personally in relation to having a child with AS?
Everything is a stuggle, I have to remember to be patient and let him do it his way. It helps to have a diagnosis now so I understand better why he is so rigid in his routines etc. The sensory issues are probably some of the hardest to deal with at times.

5) In terms of the law and disability rights what is your view? Have you taken advantage of the assistance available in terms of his/her schooling and/or medical treatment? Is there a need for more assistance?
I have no problem with any of the disability laws. We receive treatment through the school system, but some of the services are not enough. We have a need for more speech therapy and occupational therapy outside the school system. We also attend an autism program locally.

6) Have you encountered any economic problems as a result of your child's treatment?
Not really, we do have to pay for autism center treatment, but our insurance cover ST and OT for a certain number of visits a year. We don’t have as much extra money as we would like and can’t do a lot of extra things, but we are still able to get by.

7) What would you like others who have little knowledge about AS to understand about?
I would just like for people to be aware that autism is a spectrum disorder and people on that spectrum vary greatly. I want others to be more tolerable and understanding and to accept my children for who God made them to be.

1) What did you know about AS before your child was diagnosed?
Well, I did know a bit about Autism before my ds was having issues, but only about the more pervasive type - where kids are mostly unresponsive. When ds started having difficulties I researched pretty much every developmental disorder and learning disability there is out there. When ds was diagnosed I had already figured out that he was on the spectrum - it was more of a way to make things official.

2) When dealing with the doctors who diagnosed your child, how did you feel? How was the relationship between you and the doctors? Your child and the doctors?
The whole diagnosis thing was very frustrating for me. First of all I didn't want to put a label on my ds. He's a great kid just as he is... I didn't feel at any time that a truly full history was taken on my ds. Each person involved only got a small piece of it. I'm really the only one with the whole picture andeven I only have a limited idea of what happens at school since the behaviour is far better when I attend. The relationship with the doctors has been fine with both me and my ds, but my hubby has issues with them (then again, he has real authority figure issues to begin with).

3) Did the doctors and yourself share the same view of AS in terms of diagnosis and treatment?
Yes and no. I actually don't fully agree with the diagnosis. My ds is definitely on the spectrum, but he doesn't honestly really fit Aspergers or Autism. He fits something called Semantic Pragmatic Disorder far better, but it isn't officially recognised by most doctors. If anything I'd call my ds PDD-NOS. Either way, the diagnosis allows my ds to access the services he needs, so I am ok with it.

4) As parents what are some of the struggles associated with having a child with AS? How have you been affected personally in relation to having a child with AS?
This would take forever to fully answer. To me having my ds is no different than having any other child. Each child has its own unique challenges. My ds has affected my life in numerous ways, but the diagnosis has little to do with it IMO.

5) In terms of the law and disability rights what is your view? Have you taken advantage of the assistance available in terms of his/her schooling and/or medical treatment? Is there a need for more assistance?
I am happy to take advantage of any services that are available and will work to gain any assistance needed for my ds. I can't say if more assitance is needed or not, but I know that as I require help I will do everything I can to get it.

6) Have you encountered any economic problems as a result of your child's treatment?
No

7) What would you like others who have little knowledge about AS to understand about?
A kid is a kid, no matter what label someone sticks on him/her. Love the child for who he/she is and work with his/her strengths as best as you can. See the child, not the label.