[Kezs]

Does anyone know of some resources for children diagnosed with autism after the age of 5? Our Munchkin probably has it. We are waiting on results of the evaluation but the Doctor told us to start researching it because he thinks he does...and we are just lost. Pretty much the most I have found that is reliable is a description, which says it really doesn't have one because they are all different!!!

Also...when you get a diagnosis like this, is it normal to not only be worried, but relieved? We have known for so long that there was something wrong, but couldn't figure out what it is. Now we have a reason, and everything is starting to make sense. I feel relieved just to know what is wrong. Then I feel guilty for being glad about being right.

We also don't know how this will affect the adoption? That is what we are very nervous about. We are definitely keeping him no matter what. We know it will affect the subsidy, but how???

[hopefulandwatching]

Autism Speaks |

Autism Fact Sheet: National Institute of Neurological Disorders and Stroke (NINDS)

[pezcmw03]

Does anyone know of some resources for children diagnosed with autism after the age of 5? Our Munchkin probably has it. We are waiting on results of the evaluation but the Doctor told us to start researching it because he thinks he does...and we are just lost. Pretty much the most I have found that is reliable is a description, which says it really doesn't have one because they are all different!!!

Kids with autism are both very different and very similar. it is hard to explain though.

Also...when you get a diagnosis like this, is it normal to not only be worried, but relieved? We have known for so long that there was something wrong, but couldn't figure out what it is. Now we have a reason, and everything is starting to make sense. I feel relieved just to know what is wrong. Then I feel guilty for being glad about being right.

totally normal

We also don't know how this will affect the adoption? That is what we are very nervous about. We are definitely keeping him no matter what. We know it will affect the subsidy, but how??

you could get a higher amount now


Autism Society - Homepage

[Kezs]

Thank you for the links we will look at them today. It's so much to try to take in all at once.

[ladyjubilee]

Originally Posted by Kezs

Does anyone know of some resources for children diagnosed with autism after the age of 5? Our Munchkin probably has it. We are waiting on results of the evaluation but the Doctor told us to start researching it because he thinks he does...and we are just lost. Pretty much the most I have found that is reliable is a description, which says it really doesn't have one because they are all different!!!

In a way, I think "autism" has become a junk diagnosis. Just about anything and everything from ADD to classic autism can be lumped in the ASD "spectrum". One of my biggest frustrations used to be IEP meetings where I'd request and the response would be "autistic kids.....", then when I'd be prepared with a stack of research studies the response would be "but all autistic kids are different". The diagnosis itself is based on observed behavior, therefore the personal and professional biases of the diagnostician have an impact.

Sooo....no to kids will be alike because the term "autism" is used to cover a whole range of disorders, which even the "specific" disorder, there isn't necessarily an objective standard against which kids are measured (if you've filled out the parent eval form, you know that even your answers would change based on what happened that week!)....and the "cause" of the various conditions under the umbrella are either unknown or vary quite a bit. Add in that each child may also have other issues. My child, for instance, in addition to autism has significant brain damage and a history of being neglected with a suspicion of abuse (including the possibilty of shaken baby)--all of which impact his motor and visual function.

Also, this is just a suggestion, as you start researching treatments, be aware that everyone has a bias. OT's are going to view their branch of OT as "The Best", ABA therapists are going to view ABA as the "most research based", ST their method the "most effective", doctors their regime as the most curative---and parents, well, as humans we're going to really believe that whichever path we've taken is the "best" too--otherwise we would take a different path....Take everything with a grain of salt. Research all your options and critically evaluate each one. And know that none of them are really going to be a magic bullet. Only you can determine what is best for you child.

Also...when you get a diagnosis like this, is it normal to not only be worried, but relieved? We have known for so long that there was something wrong, but couldn't figure out what it is. Now we have a reason, and everything is starting to make sense. I feel relieved just to know what is wrong. Then I feel guilty for being glad about being right.

That I can't really address. LG came to me as a child with autism though he was not officially diagnosed before he came to me. I knew upfront what to expect....and frankly, he is the EASIEST child I've parented.

We also don't know how this will affect the adoption? That is what we are very nervous about. We are definitely keeping him no matter what. We know it will affect the subsidy, but how???

I don't know how it will affect the subsidy. With the LG the only "extra" I current receive is the agreement that I am allowed to use the annual fund most kids get for things like computers to pay for daycare (for mainstreaming purposes.) I am trying to get the county apply for an extra special needs adoption fund that our state has. Its kind of bizarre, but the county has somehow gotten the impression that LG is "aspergers" and not all "that low"......My little guy is actually on the opposite side of the spectrum

So, I don't know that they would automatically give you anything extra. I think it kind of depends on how much leverage you have in the negiotation. LG did have 1 relative that theoretically could have taken LG---in reality this person couldn't have handled him for a day, but it was enough that when I asked for more was told basically either I play ball or they take him. But if you have room to negiotate, then ask. The worse they can do is say no.

[happy2bjustmommy]

my 5 and a half year old FS was diagnosed with PDD last week. I am doing a ton of research on the matter and am contacting some local autism resources.
I knew that something was off on him. he is socially and communicatively ( is that even a word?? LOL) very behind, and he seems lost in his head. It is the saddest thing i have dealt with in foster care.
His CPS worker is going to get us special rate, and we are starting therapies on him right away. She knows i will drive to the ends of the earth to get him the help he needs.

My daughter has aspergers and is VERY high functioning. Dealing with big j has been a huge trial and like nothing i experienced with my own daughter. I think when you mix developmental disorders, and abuse, and foster care, all into one child, you are in for a ride!

Good luck!

[papercraft]

Originally Posted by Kezs

Does anyone know of some resources for children diagnosed with autism after the age of 5? Our Munchkin probably has it. We are waiting on results of the evaluation but the Doctor told us to start researching it because he thinks he does...and we are just lost. Pretty much the most I have found that is reliable is a description, which says it really doesn't have one because they are all different!!!

Also...when you get a diagnosis like this, is it normal to not only be worried, but relieved? We have known for so long that there was something wrong, but couldn't figure out what it is. Now we have a reason, and everything is starting to make sense. I feel relieved just to know what is wrong. Then I feel guilty for being glad about being right.

We also don't know how this will affect the adoption? That is what we are very nervous about. We are definitely keeping him no matter what. We know it will affect the subsidy, but how???

I have two austic children who are very very different, but lovely.
In England we have the NAS (National Austic Society) they have a web site with so much information, you may be able to look at the website to.
Also we have support groups here that is a good source of information and support, i found mine by looking on the web.
Good luck to you and hope all go well

pam

[Kezs]

When I asked about the subsidy, I wasn't worried about the amount...I am more concerned with making sure he has the medical access he needs. We have to have medical for him because of the costs of all of his medicines! The actual money amount would be nice to pay for sports and summer camps, but we don't need it.

I know it may be a catch-all disorder, like you said, but talking to the Doctor it was the first time I felt like someone was asking questions about Mnchkin, rather than a check sheet. I mean, he was reading a check sheet, but it was a sheet that matched him. I knew there was something wrong, but I never would have guessed autism. We have been through every Doctor in the book trying to figure it out.

I am slowly working my way through all the sites, but I am really anxious to talk to our therapist. He is great and he was the one who referred him for the Autism. I know he will guide me through it all. It's just a lot, you know?

[CelticMomma]

First off I wanted to send (((Hugs))). Getting a diagnosis can be both a relief and incite a feeling of terror. My oldest was diagnosed with Asperger's at the age of 13. Quite late in the game but that was back when they first started looking at Autism as a spectrum disorder instead of a hard and fast "box" idea.

I felt much like you do. I was relieved to have a diagnosis that fit my son but at the same time I was terrified over what that could mean for his future. He went through some very dark times but is thriving today and I couldn't be any prouder of him.

And dear ol' "Dr. Google" will provide a wealth of information, much of which will contradict what you just read five minutes before. From your post it seems that you have a good handle on what your son's needs are. That is the best thing that you can do for him and some of the best advice I ever got on dealing with my son's issues. Be his voice, advocate, make a nusicance of your self when need be and stand firm when you know that something is "not right" or in his best interest.

I would also suggest finding a local group to meet with. Having parents in the area who have first hand experience with schools, programs, etc. is a great resource.

I'd say that even though he is getting his diagnosis a bit late that he has the most important thing already... a family that will love and support him no matter what.

[teacher1998]

A late diagnosis isn't ideal, as I'm sure you are aware. Early intervention is critical. It's late, but not too late. Time to get busy. From the moment the word autism is uttered you've got work to do. You are on the right track with looking at the research. I suggest doing some of your own. We tried all the therapies...very expensive. Some worked better than others. The diet will come up...worth trying...I suppose. My 10 yr old has low end aspergers (yes even aspergers has varying levels). He takes meds, has on going therapy and a private tutor to bridge what he's missing in school. It is very expensive!!! When looking at the subsidy....do your h.w.....he needs the most you can get. Good luck.

[ladyjubilee]

Originally Posted by Kezs

When I asked about the subsidy, I wasn't worried about the amount...I am more concerned with making sure he has the medical access he needs. We have to have medical for him because of the costs of all of his medicines! The actual money amount would be nice to pay for sports and summer camps, but we don't need it.

If he's being adopted from foster care, why isn't he getting Medicaid? As long as it is a standard treatment (there are a lot of wacky treatments), Medicaid should cover it.


I guess it depends on your child's level, but don't forget to start thinking long term. Sure you may not need the $$ now, but when you're 65 and have an adult child still financially dependent on you, will your social security extend that far?

[alys1]

Are you familiar with:
Autism Treatment Center of America: The Son-Rise Program
First I read the Son Rise book. Then I heard the son of the couple who wrote that book and started that center give a talk. His parents created a miracle for him. I think no method has 100% results, but really admire theirs.

And: The HANDLE Institute
The HANDLE Institute -- Leader in Treating Autism and the Autism Spectrum
Program was developed by a woman who was autistic. Know about because one of the early locations was Seattle, people I know have used the program for their children. I've seen videos of, for instance, a deaf child who had never vocalized, doing one of the HANDLE "activities", and beginning to make sounds in the midst of the activity.

I heard the founder speak once. She even had success with a man who'd been in a hospital bed for years after a horrendous wreck. He ended up able to think, talk, and walk on his own. Not overnight, of course.

Like every modality, I think it depends on the talent of the individual provider, and do they "click" with you, and/or your child. You know?

You might feel relieved to read "The Brain That Changes Itself" by Norman Doidge. I read that when I wanted to lose forever the concept I'd been taught, that our brains "are what they are and go downhill all our lives." That book awakens us to how wonderfully changeable our brains and other internal systems are.