New aspie mom needs advice
I'm brand new to this and trying to digest information as fast as I can. Today I got a call from my son's summer school program. The school psychologist recommended that I have my 14 y.o. son be tested for Aspergers. I immediately started to read the internet and, wow, it describes him to a T.
Life is in transition right now and I could use help to get the proper resources in place as quickly and efficiently as possible.
We are moving to a different state (Washington) in two weeks. I'm starting a new job with excellent medical coverage and found one of the best school districts in the state and have rented an apartment walking distance to the high school. So I think the resources I will need will be available if only I knew the right questions to ask.
How do I go about getting a formal diagnosis? How do I find a good doctor or other specialists? How can I find a local group or other support resources? What should I be asking for at his school? How can I help my son settle into a new place?
We are coming out of a difficult period of time. My husband passed away last year after a long illness and my daughter just graduated from high school and is off to college. Middle school was really rough academically and socially for him. It will be just my son and me, with wonderful extended family nearby, and I want to do everything I can to give him the care and attention he needs and get him back on the right track in life.
melody.
there are no definitive diagnostic tests for AS.
There are DSM-IV criteria but it is all subjective and different countries have different criteria for a formal diagnostic approach.
here in the UK there are psychologists who specialise in autistic spectrum disorders. there are very few but they exist and they can diagnose.
however in the US and the rest of the world i am unsure of the correct approach but i would start with a psychologist who specialises in ASD's ( autistic spectrum disorderrs)
warning: for evey psychologist that is legitimate there will be 100 other "paraprofessionals" who are willing to take your money at your time of anxiety these range from : dieticians, speech therapists, psychologist and psychiatrists, heavy metal testing, brain scanning testiing, music teaching therapists, interventionists who want to cure ASD's, clothing manufacturers who will seel you ASD clothing, Animnal therapists who offer ASD's friendly horses and monkeys.
life coaches....ASD consultants, frustrated mothers groups....everything and everyone will tell you that their method is better and is worth paying for while critiscing the other.
my advice: see a psychologist ( not a psychiatrist) who specialises in ASD's. develop a relationship with them and take their advice. but be aware the psychologist will be under pressure to refer you to others who want a slice of the AS action. its a new and growing cottage indisrty surrounding ASD's that is growing and exploiting the lack of an objective definitive test and diagnosis for ASD's.
why take my advice?
im 37 im AS my son is 6 and AS, i have seen them all. but most importantly....my advice is free!
Here is one of the organizations that may be able to help you out when it comes to learning about AS. It's the Center for Autism & related disorders.
CARD
Bear in mind though, the diagnosis doesn't change who he is. All of the things you love about him, and all of the things that make you crazy will still be the same. CARD can help him leard about the condition. He can learn to play to his strengths and downplay his weakness.
Here's something else that I hope is some help to you.
Self-affirmation Pledge for those with AS
by Liane Holliday Willey
I am not defective. I am different.
I will not sacrifice my self-worth for peer acceptance.
I am a good and interesting person.
I will take pride in myself.
I am capable of getting along with society.
I will ask for help when I need it.
I am a person who is worthy of others' respect and acceptance.
I will find a career interest that is well suited to my abilities and interests.
I will be patient with those who need time to understand me.
I am never going to give up on myself.
I will accept myself for who I am.
_________________
"...A genious with access to unstable chemicals.
..."
I would definitely see a neuropsychologist to get your son diagnosed. The test/evaluation should take practically all day. I would ask how long the evaluation is and if they say 1 or 2 hours, don't go and find yourself another doctor. The doctor should give you a list of resources if your son is diagnosed with ASD. Also, check search on the web for local support groups. Once you receive a diagnosis, you should share this with your son's school so an IEP can be set up. He should get lots and lots of support and accommodations.
Hope this helps!
Since you've gotten this far without anything extra, I would approach the new world of services with caution. Remember that the idea is to support your son through issues that are difficult for him, but not to change who he is, for many of his most amazing characteristics (and I am sure he has many!) are no doubt tied to and part of his AS.
We only have a school use diagnosis, received from the school, and have been able to get all the services we feel our son needs through the school. This seems to be rare, however, so you may need the medical as well. The tricky thing is, and you should discuss this with your son, that many AS teens aren't too happy about having AS on their permanent records. Doing things as we have for my son, once he's out of this school, the AS label doesn't have to follow him unless he wants it to. Also, I've read posts by AS teens who found the diagnosis process really invasive and uncomfortable, and wished their parents had never subjected them to it. So, again, talk to your son and make sure that every step you take is something he's fully on board with. At this age I believe it's really important.
Long run, a label is only as good as what it will get you.
For high functioning AS, what is that?
First and foremost, an explanation. That was invaluable for my son. He loves hearing about famous Aspies, what is the norm for Aspies v. the NT population, and understands that for every burden AS gives him, there is also a gift. He loves his gifts, wouldn't trade them for the world, and his self-esteem is really strong. However, other AS take the label differently, and feel the loss of not being NT, so the answer won't always immediately turn on a light bulb.
Second, and probably important for you son, are accommodations at school. Aspies process information differently, and many have physical conditions that make certain aspects of school difficult as well. My son, for example, has permission to dictate school papers, shorten homework as needed to reduce stress, and may leave the classroom unquestioned to escape sensory overload. I've read posts here from high school students who get paper copies of all teacher overheads instead of having to take notes, and things like that. Basically, think about WHAT made middle school difficult for your son, and brainstorm suggestions to address it.
Third, and I cannot tell from your post if this will apply, are services. Some common services for Aspies are social skill groups, counseling (the stress from being Aspie in an NT world), occupational therapy (sensory and motor skill issues), and speech therapy (pragmatic speech issues).
To address both areas 2 and 3, your son will need an IEP (individualized education program) at school. To address area 2 only, your son can have a 504 plan at school.
Which means ... I would start by calling the school and asking what they need in order to (a) put in place an IEP or (b) a 504. Then you go about getting the checklist accomplished.
Lol, I'm a touchy/feely pragmatist. How do I get to the result I want using the smoothest and most effective route possible? Everything above and beyond that is energy I can spend better being one on one with my amazing child, tuning in to his needs, and adapting our lives.
_________________
Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).
We just found out our six year old has asphergers seven months ago. We just told him. I would include your son in the journey and create the goals together. A nueropyschologist is the best way to go. Testing by the school district is also reccomended or if the school district offers social skills classes. IF your son has a hard time transitioning between classes, you can advocate for him to change classes five minutes ahead of the mob as a part of an IEP. THis is one good thing that could come out of school testing even if services are not needed. THere are many coping supportive things that can be added to an IEP.
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