Reply to Reminder about the purpose of the Kids with Special Needs Forum

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[quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=jsteele][quote=Anonymous]
(And moreover, it's absolutely a thing that people avoid autism evaluations out of fear of stigma. It took me three years to do it for my own kid. Aggressively reacting to the suggestion of a screening is absolutely related to autism stigma. And for those of us with autistic kids ... yes, this is hard to see.)[/quote]

You are just going to have to accept that assuming everyone is doing this and repeatedly hammering your position is not helpful and is contributing to making this forum less useful than it used to be.
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What the real issue with this poster here?  It sounds like you are trying to save people from your experiences, and that's great that you are here to help but how you are going about it is not helpful.

What are you looking for from the rest of us?  It sounds like you had a very difficult experience getting help for your child or you choose to wait and feel bad about it and want to save other families and kids from going through it but being aggressive and attacking other parents and more importantly, attacking their kids is the absolute worst way to go about it.

If you just look at ASD, you may be missing something else.  Kids need compressive medical and developmental evaluations because ASD is a label for people with similar traits based off checklists and observations.  Many of us have done a lot more than discussed on here from vision, hearing and speech evaluations to genetic testing and MRI's/Xrays, etc. and more for rule out as there are other disorders that look like ASD that are not ASD and any good evaluation is going to include all those things, which you never point out.  [/quote]

I never said “It’s only ASD.” you’re projecting your own issues. If you got your kid a full autism evaluation and they said no autism, then that’s the end of the story. But on an anonymous, general forum, when people post asking for help and describing autism symptoms ... people are going to ask or suggest an autism diagnosis. If you act offended by that, then it becomes a matter of your own prejudices.[/quote]

How can we best meet your needs?  You are looking for all of us to say or do something and it seems to be more about your looking for something related to the choices you have made or were mislead by "professionals' on your child's needs.  It great you are trying to help others not make the mistakes you made but it would be helpful if you did it in a more positive, helpful and supportive way.  A neuropsych is a great tool for many kids.  But, it also has its limitations and isn't necessary for all kids. [/quote]

I never said anything about a neuropsych? I raise my story as an example of why it is appropriate to mention autism when a parent asks a question here, in certain cases. Do you think autism should never be suggested?[/quote]

If a parent asks about asd absolutely but otherwise you tell them to start with a ped or developmental ped or both and depending on their insurance.  They should be referring the child for additional testing. If asked, you can discuss what testing is available and make suggestions on who is good but to flat out answer with a neuropsych or ADOS is not ok except specifically what are the best tests are for asd.

There are so many different ways to get a child help.  But the help should start with their doctor rather than someone on the internet.  There is no right or wrong way.  The important thing is the child and family get the help they need and we should be focusing on that which is what brought most of us here.   What works for one child may not for another.

This board is great for resources.  We found preschools, schools, evaluators, and therapists.  We also found out who not to go to, when Jeff can allow it.  Hopefully others can benefit too but without all the hostility and name calling.  Your way worked great or hopefully is working for your child.  My is working well for mine.  But, it’s nice to have the resources shared  if we, you or anyone else needs something different later on.  I would, for example, not known to check NIH for evaluations except when someone shared that. Or, that there were other resources outside the school system or private pay until I read it here.

All the bullying, name calling and I know what is best for your child and my way is the only way is doing far more harm than good as you run off people trying to help or more importantly need help and have no other place to turn.   Read some of the attacks. How would you feel if the situation were reversed and someone treated you like that?

And, yes, there are families who deny ASD.  There are also families who deny dyslexia, families who deny speech issues and even families who Deny the need for yearly physical exams and things like eye exams or hearing tests. Or, overlook mental health issues that can look very different in kids vs adults, like depression.

All we can do is support others where they are at and hopefully when they are ready or need more they will come back.  But to do that, we need this to be a warm and welcoming board they will want to come back to when they are ready. Then, when they say they tried this and that, then the next step is to recommend targeted evaluations, neuropsych, psycho educational or other specialists depending on the need, ability to pay, etc.  And, it is ok to get multiple opinions as much of this is educated guesses and not an exact science. 
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