Your Advice Requested: Support and Direction for Parents of Kids with High Functioning Autism
That's because Tom, who is certainly verbal and engaged, has very idiosyncratic speech patterns - and a lot of anxiety around dealing with kids his own age. He's shy, and unlikely to raise his hand in a group. He daydreams, and has a terrible time listening to and really understanding a teacher standing at the front of the room.
It can be hard to find the right setting, treatments and programs for a child like Tom - or for other children who are, perhaps, higher functioning than Tom but who have difficulty with sensory input, managing social cues, and generally fitting in. These kids may not need "special ed" - because they're academically advanced - yet they do need a great deal of support.
Sometimes, kids like these can fall through the cracks. Parents may need to do a good deal of advocating to ensure they receive the support they need - without being pushed out of the mainstream.
Personally, I feel that developmental treatment approaches such as Floortime and RDI, are probably good choices for these kids - because they're intended to build emotional as well as behavioral skills. Social skills training is also key, but it needs to be the "real deal" - not just Emily Post-style instruction on how to share nicely or make polite chit chat. For parents, it's important to find a group that supports your particular needs - as well as groups that focus on the entire autism spectrum.
If you're a parent, autistic adult, therapist, or teacher - what do you recommend to parents of young children with high functioning autism? Where do you find support?
Comments
As a teacher, I find support online and through my students’ parents. I hope that parents can find support in teachers as well, since we are all in this together.
I don’t know much about the RDI approaches, but I think that ABA can be useful for these students as well. I don’t think that they probably need a “formal” ABA program, but I think it certainly may be helpful to use methods based on Behavior Analysis to determine the function of any challenging behaviors that a student has and teach appropriate replacement behaviors. This is done through a Functional Behavior Assessment (FBA).
For social skills, I really like to use social stories, as well as the book “Promoting Social Success
A Curriculum for Children with Special Needs” by Gary N. Siperstein, Ph.D., & Emily Paige Rickards, M.A.
I think that one of the most important things is to nourish the child’s unique interests and gifts, since you never know what might turn into a future fulfilling career for the student. A great book about how to use special interests to help students with academics, transitions, social situations, etc. is “Just Give Him the Whale” by Paula Kluth and Patrick Schwarz.
You can tell I really think these topcs are important because I’ve written issues of my online newsletter about them.
Nicole Caldwell, M.Ed.
Great advice, Nicole. To which I might add, never forget that ASDs are developmental disorders. That means the children will continue to develop, adapt, and gain skills. Have faith.
Also, be aware that most of the “information” available on autism is junk. Autism is not a misdiagnosis for mercury poisoning, a view still widely held. There is no credible evidence linking vaccines to ASDs. There’s no reason to believe that autistic kids suffer from GI issues any more than NTs. Once you start falling for the hype, or read significance into Jenny McCarthy’s latest work of fiction, you will lose sight of the most important task – to support the child you love and care for.
My 6 year old son has Aspergers. I find it easest to befriend everyone you can within the school setting. I have quite frequent meetings at the school, so it is fairly easy. I read as much as I can and we try different things until we find a unique combination that works. As a parent, you have to be friendly but firm and assertive, I find. People may not like everything you say or do, but they will respect you. Often times, parents just don’t take the initiative and many just don’t care, so for a lot of school officials, it’s comforting to work with a parent who truly has an understand of their child and is willing and able to be their advocate. As a parent, you have to have confidence in yourself and in your knowledge. Read everything you can, try different things, find what works, learn your state laws, and always remember that you are your childs best hope.
Depending on the severity of behaviors, get behavioral support. Get a TSS worker and a BSC worker and REALLY help to write the treatment plan. Stop in at school periodically and unannounced to make sure what you want done is being followed. Befriend everyone that works with your child, but, if a problem arises, do not hesitate to do everything in your power to get it solved.
Befriend the schools director of special education. You can have an IEP without taking your child out of mainstream classrooms. Save every shred of paperwork you ever get concerning your child. Request a personal aide for your child who is employed by the school district. Get a mobile therapist to help your child at school.. Your will goes along way!! Teach every willing and able family member who comes into contact with your child your own personal “gameplan”.. Everyone can act as a therapist and teacher.. This is what I do and though there are battles and rough spots along the road, we are progressing. Thanks for listening!
Oh, I have so much I could say. I was diagnosed with PDD NOS at 15 years old, so this is from my experience of being a high-functioning autistic kid (as well as stuff I’ve read):
* accept them for who they are. Part of the reason I was diagnosed so late is because my parents didn’t believe the schools when they said there was something wrong with me. No, they weren’t in denial, they knew what I was like. It was the idea that there was anything wrong with being that way that made no sense to them. One of my principals suggested I might have Asperger Syndrome and told my father what it was, and he described the condition to me (not telling me the principal thought I had it). I said ‘there’s no such condition. If there was, I’d have it!’ I was so confident that there was nothing ‘wrong’ with me. I only considered the possibility I might be autistic when I read stuff by autistic neurodiversity advocates, because I always knew there was nothing wrong with being different. That’s the best thing my parents did for me.
* tell them about their diagnosis – not in a ‘this is what’s wrong with you’ way, but a more neutral ‘you’re different, and this is the name for how you’re different’. I know with me, I was definitely aware that I was different in some way by the time I was 10 years old. My guess is that’s probably the best age to tell them – younger if they ask (note: this goes for lower-functioning kids too – even if you don’t think they understand, tell them they are autistic just in case they do).
* make sure they have contact with other autistic or otherwise atypical kids (such as gifted, mildly developmentally disabled, etc). A lot of higher functioning autistics are in mainstreamed classes, as I was, and may rarely, if ever, spend time in a social group where they’re not the ‘odd one’. It’s good to have the experience of being the majority, and to be able to relate to the others the way the sole autistic in a class never can.
* don’t forget that they are disabled. Too often, people forget that the same problems low functioning kids have can be present to a milder degree or less frequently in high functioning kids. Examples include communication problems (nonverbal when overloaded, automatic meaningless speech that seems to be meaningful, difficulty processing speech, etc), self-care problems (due to motor delays, sensory differences and/or poor planning skills), and so forth. High functioning/low functioning isn’t an absolute divide, and we’re very prone to being overestimated.
* on a related note, watch out for too much stress. If a high functioning autistic kid works 10 times as hard as most kids, he/she may be able to function normally or near-normally. This doesn’t mean that kid should be expected to function like that all the time. Not only is it unfair to expect so much harder work from the kid who is different, but it’s not practical either. Sooner or later, that kid’s going to hit the limit – this might be one contributing factor to the regression in adolescence some autistics have. And often the choice is between us working very hard to function at a mediocre level in most areas, or working much less hard and being exceptional in one area. All the really big names in science and art followed their passions – and many of them showed autistic traits. Temple Grandin, an autistic woman with several degrees who is a world-renowned animal behaviorist, became obsessed with cattle shutes as a teen and turned that obsession into a career.
Ettina, thank you so much for your perspective and advice, esp. for those of us (parents) who, no matter how hard we try, just don’t “get it” & in some ways never will. You encouraged me in what I’m doing right & helped me see what I need to do different. Best of luck & God bless!
As the parent of a 6 year old child with PDD-NOS, I have thrown myself into doing everything possible to help my child. Research, books, doctor’s, etc. I will never leave a stone unturned when it comes to him. He also has ADHD so we are somewhat complicated because what works for one may not work for the other. We have been very lucky to have found a Doctor that did not look at me like I was the one that had something wrong with them and actually helped me. Through him we found a specialist with the same passion and concern for helping my child. This was the first key for us. When it was time to start school, we again hit the jackpot with a brand new charter school opening in our town, we are now in our second year at the school and due to the great teacher he had last year and the great teacher he has this year, he is a honor role student with excellent behavior. The teachers at this school even went so far as research to see how their classrooms should be set up to best accomadate my child, they have thought to put into place special assignments to accomadate this extremly intelligent but antsy child. They have helped to crack a small part of the code to get into my child’s head. And the best part is we do this as a team for him. So my biggest suggestion is to find a good fit with your Doctor’s and your school. My child lives in a different world than us but with lots of helping hands everything can change. I give THANKS everyday for all those that stand beside us not behind us.
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