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Very good article.
I am nearly out of spoons at the moment, so I’m going to turn a few twitter threads into a blog post because I think it is an important topic. I highly recommend you read the responses to this thread, which I am posting below along with another thread.
Note: When I say “neurotypical” in this post I am mostly referring to abled non-autistic people. Most disabled people experience burnout, but autistic burnout in particular is still different (even if you have other disabilities, like I do).
Why It’s Different
I think I just realized why autistic burnout is so bad.
It’s because when abled non-autistic people reach their limits, they can’t go on.
When autistic people reach their limits, they continue because they know they have to continue to be considered valuable.
I was told that if I get burnt out, I won’t be able to do anything…
View original post 1,235 more words
Yesterday I met with the LSSP from the school to go over Tyler’s last Full FIE (evaluation) preparing for his transition IEP and ARD meeting tomorrow.
In a nutshell, the evaluation was encouraging. In 2008 at the initial evaluation Tyler developmental age was about 2 – 2 ½ years old, non verbal, not potty-trained and so many other things. When I reflect back to the many challenges he and I faced it explains a lot. At age 5 he said a few words. He didn’t start having complete and full sentencings until 12 or 13. For years it was 3 word express. I.e. “I want Walmart” instead of “I want to go to Walmart” these full sentence formations come with a lot of redirection and practicing adding words to communication. Tyler knows a lot of words, understands punctuation and sentencing but can’t build them and struggles with full sentences but he definitely tries and accomplishes it many times.
I decided early on, that I needed to focus on Tyler’s behavior (which was so challenging, he was so aggressive, destructive, and his sensory issues were off the charts) and manage this behavior, social and academics at his developmental age.
Autism has taught me many things – or should I say, Tyler’s autism diagnosis since everyone on the spectrum is so different just like you and I. A few things autism has taught me to ignore society’s goals, that words do not mean communication, that those on the spectrum have no real idea how courageous and strong they are. Cognition delays are so difficult in teaching anything to someone, so IMO teaching them at their developmental age is easier. It has taught me its 100% o.k. to be outside of the box that society thinks is “normal”. The list of teachings goes on and on.
In a nutshell – today Tyler is a between a 5-10 year in various developmental areas (so in 13 years he’s developed 2-7 years). Tyler is not I.D. All of Tyler’s delays are common with those on the spectrum. Tyler’s real strength continues to be visual learning. The LSSP was at Tyler’s initial eval in 2008 and was the one to complete his final eval – this was exciting for both of us. He was very generous with complimenting Tyler on his incredible progress, especially this school year alone. (this is the 1st school year that there were no behavior reports and he managed all the changes and transitions the school had to implement with no problem). He was very impressed with Tyler’s ability to stay on task (without lots of supervision) his kindness in meeting and greeting those in and out of the classroom and very much a team player to his fellow students. His cognitive delays are still strong which impairs communication. We really touched on many many positives of the evaluation and his observation of Tyler in the classroom. He supports my desire to keep in him in speech therapy (because it’s not words and articulation we are working on but communication speech) we’ve been in speech for 10 years and will continue as long as the insurance allows. We reviewed some of the items I purchased to continue Tyler’s learning after this school year and he reassured me that my choices for these areas of focus are what he needs. I know the terms high functioning and low functioning are not medical terms and are no longer used – but IMO – high functioning AU applies to those with an Asperger’s diagnosis (which is also a term no longer used). I don’t feel that Tyler is low functioning any longer he’s probably not even in the “middle” ground. Basically if I dropped Tyler off in a strange place – would be able to function and survive, ask for him, make life and safety decisions, work, make financial decisions, etc., the social awkwardness is hard for all on the spectrum but higher functioning individuals can survive in the world somewhat on their own. If I go by Tyler’s progress today, Tyler will always need a “trusted shadow”
The LSSP and I spoke quite a bit about behavior as I have always known, smart is smart, but if your behavior keeps you from learning (or distracting others from learning) you will never achieve learning as you need to and you interfere in others learning too. I also reinforced that “behaviors” are a variety of things, not just aggression or noncompliance (for safety issues). Tyler’s primary behaviors are/were aggression and noncompliance (for safety issues) but the list of inappropriate behaviors for many others on the spectrum are as different as individuals.
Tyler and I have talked about him going into the 2 year transition program (that there will be no more high school) to help develop more independent living skills (though he’s not able to live independently but to be able to be independent in my home) and to begin stronger social skills and job skills so that I can help him enter a job training program that I’ve had my eye on. The LSSP did assure me that Tyler definitely meets the criteria for acceptance into the program but that he is fully aware that Tyler’s behavior can be very problematic (which can keep him out of the program since it’s not structured with the same type of staff as a FOCUS classroom) but with the improvements he’s seen this year and hopes to see over the next 2 years that he may actually be accepted into the program and complete it successfully. We did discuss that (as it stands now) the best job choices for Tyler will be things that don’t require split decision making, that are very structured and routine, quite and not a lot of verbal transactions. He can follow charts and written directions and is very capable of learning a routine if you visually show him.
I was beyond excited to see Tyler’s improvements to discuss with the LSSP what they visually saw in addition to the “data” results from all the various tests provided, including the most recent speech eval from TCH. So this helps me in my understanding and continued direction for teaching him. There are many areas that he and I will work on the next two years and longer until he “gets it”. The LSSP completely understands and respects the fears I have for Tyler as an adult and knows that much of it is due to this developmental delays and encourages me to just keep on trying to reach the goals that I have in place for him (these are not school related goals) Tyler is still (for now) medication free. I am not as strict on his diet as I used to be but still try to keep it fairly clean. Tyler still uses chemical free toothpaste and deodorants, no dryer sheets, his body soap changes but I do try to be aware of the chemicals in the soap. I still use as my primary cleaner in the my home Thieves cleaner to keep the amount of exposed chemicals down. Tyler does take a good vitamin regimen, meat based with a few plant and use a THC free CBD oil which has made mounds of difference in Tyler’s in his cognition and ability to manage stress a little better than he has in the past. I do try to manage a very structure schedule for him, it helps with stress. I 100% respect his sensory issues, his stims and don’t force him into situations where he doesn’t want to be or that will cause an aftermath of hell when it’s over.
Saw this article on FB and thought I would share
Autistics and Allies Against ABA & PBS Ireland
December 9, 2018 · Alternatives to ABA
Before you do anything:
1. Love and accept your child. Know your child is fully whole, human and has a wonderful life ahead.
2. Listen to autistic people
3. Understand the purpose of ABA is to train autistic children to pretend they are non-autistic so when you ask for alternatives by clear what you’re looking for.
4. Remember Autistics are different in our development. Don’t panic if we don’t know how to do something at 4 that non-autistic do. Chances are that non-autistic kids don’t know how to do things that we can. We develop differently so measuring us off non-autistic milestones is nonsensical.
So now you want a way to help your child with what?
Sensory: Occupational Therapist or find things to distract. Distraction from offensive sensory input can stop sensory overload OR help The Autistic Community with its campaigns to change our environment, then we wouldn’t have sensory overload at all!
Behaviors: listen to autistic people who can explain all of this to you. Behavior is
communication, stimming is part of our language and part of our learning process.
‘challenging behaviors’ should not be happening, if they are then something is radically wrong in your child’s life. It’s either sensory or emotional. This can be caused be someone misinterpreting them continually because they are not listening to autistic people or by the sensory environment. Understanding your child and studying their language will teach you what you need to change. Meltdowns have nothing to do with being autistic. Every human being melts down under severe stress. If meltdowns are happening then it’s up to you to find the stressors and remove them permanently.
Speech: speech therapy can help or you can begin to learn about AUTISTIC LANGUAGE and culture so that you can learn your child’s language instead of putting them through years of therapy. Autistics communicate all the time, others just don’t interpret our language. Stimming is part of our language, as is posture, gesture, movements and sounds (same as every other human). There are lots of AAC devices on the market, AAC users recommend you start teaching them early on, everyone has the right to communicate.
Play : Autistics play in autistic ways, that’s why autistics become experts, inventors and are natural problem solvers and environmental communicators. There is no need to teach your child to play.
Engaging: make it interesting or join in with what we’re doing.
It’s important to remember that Communication for some of us is not a transfer of information or words. It is sharing a space and time with another. We ARE engaging just by being. This should be respected. Words are our second language so it’s important you remember that.
Learning skills: we learn things best when the motivation comes from within, when there is an actual need for us to learn to do something. Also we may do things differently but they’ll serve the same purpose and that’s ok. We learn best by experiencing, thinking, touching, figuring out and stimming is actually part of our learning process. We stim to store the learning, we stim while we’re processing or figuring out. We stim to recall our learnings. Stimming is not just for self regulation.
Learning, like everything we do is an emotional process for us. This is why we have ‘special interests’ or passions. We need a rich and full understanding and we need to know the REASON why we have to learn certain things. If it’s not logical then good luck trying to make us learn it.
Social skills: autistics have ‘social skills’ . We have our own language and culture so we don’t need to become someone else. We do need some help with non-autistic language and culture so we can learn about that the same way we’d learn about any other language and culture. Through role play, games and figuring stuff out. It’s important that our autisticity is respected at all times as a valid culture and language and that you realize that ‘processing delays’ are often just me translating your language into mine and then back into yours so you can understand.
Building confidence & Self belief: look for activities that your child enjoys and will thrive at. Drama, music, art, dance, lego, horse riding ….the list is endless. Autistic kids can do activities too, everything doesn’t have to be a therapy!
Peers: find other autistic people , we tend to get on with each other. Also some of us can enjoy the company of older or younger kids. I’m 42. My friends range from 22 to 65 …. why do 8 year old kids have to only be friends with other 8 year olds?
Autie-biographical Comics (you can find Autie-biographical Comics on FB)
The Light it up Blue campaign is the bane of so many autistic’s existence during the month of April. Please don’t participate in it if you actually care about autistic people. You want to support us? Support Autism Acceptance and go Red Instead, or Light It Up Gold. These movements were actually made by autistics, and are supported by autistic run organizations like ASAN, and Autistic UK.Learn more about Red Instead here: https://speakingofautismcom.wordpress.com/…/this-april…/Learn more about Light It Up Gold here: https://autisticuk.org/going-gold-for-autism-acceptance/