Join us for the Autism and Mental Health Symposium June 9, 2018 to explore barriers to access to mental healthcare for people on the autism spectrum. Register here.
It’s well established in research literature that people with autism and related disorders have an increased vulnerability to mental health challenges. Despite this fact the mental health resources available to autistic people and their families in their communities are limited. In Onondaga County the clinician to patient ration in mental health is 1 to 202. In that number few are able or willing to meet the mental healthcare needs of autistic people. Families and individuals are left with little or no options for addressing their mental health care needs. We can do better.
Register now for our Autism and Mental Health Symposium to explore the barriers to access. Be part of the solution.
Gluten free diets, casein free diets, elimination diets, supplements, or any combination thereof. Are they any good for people on the autism spectrum? Research still says, no doesn’t really look like it.
Over a decade ago when my children were first diagnosed with autism gluten free and casein free diets were the thing to do to treat autism. I did some digging to find the scientific basis for the belief in this special diet. What I found were studies with small sample sizes, no control groups or poorly matched control groups, no blinded or doubled trials (researchers and participants often knew what they were getting), subjective measurements of outcomes, and no clear mechanism for how the diet was supposed to work or what is was supposed to improve.
I tried a gluten free diet anyway because, hey it was only food. After a year my children were still their autistic selves. I left behind the expensive food and dubious claims about special diets.
Fast forward to today and there have been some high-quality studies done on not only gluten free and casein diets but also the various restriction/elimination diets that parents try as well as the supplements they are often encouraged to use as treatment for their children’s autism. The results are still underwhelming.
Some days it feels like being a parent requires me to be a general education specialist, a special education expert, a psychologist, a neurologist and neuroscientist, a geneticist, an education law specialist, a diplomat, and a hunting dog all at the same time. It is exhausting. But it’s what you do. Will there be a time when I’m not going to advocate for my children and others like them? When I’m dead maybe.
My kids want to go to college. That means it’s my job to make sure everyone does their job to give my children that opportunity. Sometimes that means holding my children to a higher standard than others have for them. Sometimes that means cutting them some slack. It’s a delicate balance that requires knowing the child in question and what best motivates them.
Mostly it requires being present and aware of my child and their needs. It means setting in my mind that they can achieve their goals and working alongside them to make sure it happens. I fall into bed exhausted every night. My children do as well. We all work hard fighting for our futures. It is so worth the battle.
While I’m doing all that I also get to do the regular parent stuff. The nurturing, the loving, the laundry, the cooking, the cleaning, the teaching of life skills and how to be a decent human being. I need a nap.
April rolls around every year and every year for autistic folks, their families, and friends we become the center of a media frenzy. Some welcome this some not so much. Lost in the hubbub though is the fact that life is precious and beautiful especially when me make conscious decisions to make it so for our autistic selves, family, and friends.
When we think of social isolation in the context of autism spectrum disorders as parents we often worry about the social isolation our children may experience. We are concerned about the hurt we assume they will feel as a result of it. This spring I was dismayed when one of my teenagers missed out on a school dance. I was determined that he would not miss another opportunity to socialize with his peers. After all I know how much those opportunities to socialize meant to me when I was his age.
When the next school dance rolled around I made sure to have all my ducks in a row. I started with my husband first. You know that whole united front thing that parenting and relationship experts talk about. My husband’s response was something along the lines of, “Dance? Why would anyone want to waste time on something like that?” He then proceeded to retell the story of his parents writing notes to school to get him out of having to go to school dances. Something about being against their religion or some such. So much for united front.
I was having the conversation about the school dance with my son on my own. It was a very brief conversation.
I've been busy researching and writing my first book about autism, Parenting Autism. Please considering supporting my book by donating and/or spreading the word. Thanks!
Your praise may be the only good thing they hear about themselves all day so make it really count.
Another school year has started and my kids are all getting used to the routine of a new grade and a new set of teachers. I spent this morning meeting with every teacher of my children that I could find. My fifth grader’s teacher and I had a particularly long chat. This teacher also had my seventh grader two years ago when he went through fifth grade. We had a good chuckle about what a challenge that was for him, the teacher. My current fifth grader is one of those challenging kids that may find his way to a self contained classroom if school staff can’t find an effective way to manage his behavior at school.
I’ve introduced the Nurtured Heart Approach® into our conversations about my fifth grader. We’ll see how receptive the school staff are to it. I’ve had a great deal of success with NHA® at home. But that’s not quite what this post is about. While we were chatting I mentioned the fact that my fifth grader is a great student of human behavior. This prompted my son’s teacher to go on and on about how sensitive his autistic students are to the behavior and emotions of the staff and students working with them. He seemed in awe of their abilities to do.
I was pleased to hear him make this observation about his students. He described how it might take a typical student a week to figure out how to push the teacher’s buttons where one of his autistic students could figure it out after just one go. Often times people think that autistic people are not dialed in to what’s going on around them. But the truth that my son’s teacher recognizes is that autistic children and adults are often fully aware of the emotional soup that we are all drifting in. Their social challenges put them in the situation of having to be very creative in how they get their needs met. Often times what gets them the most attention is acting out.
At this point I jumped on my NHA® soapbox and pointed out that NHA® is the perfect way to short circuit the negative attention seeking. By refusing to give energy to the negative and instead giving it to the positive these sensitive students can learn how to interact in a healthy fashion with everyone in the classroom.
But going back to the sensitive nature of autistic people, my son’s teacher commented that while not all of his students have been verbal they have clearly been aware of what was said to them and about them. While the main tendency is to characterize autistics by what they cannot do or by what they have difficulty doing it behooves us to remember what they can do. Sometimes we have to remind them about what they can do. The constant focus on what a person can’t do can leave anyone feeling as if they can do nothing.
So if you are a person of influence in the life of someone with autism, or some other special need, take the time to see what they are good at. See what they are doing right. Then take your sweet time telling them all about how awesome they are. The sad truth is that your praise may be the only good thing they hear about themselves all day so make it really count.
By: Tikatia Morris
Swinging is an activity enjoyed by neurologically diverse and neurotypicals alike. Many parents will whose children participate in occupational therapy services may have seen their children using a platform swing. These swings are helpful for building trunk support, learning balance and provide an excellent source of vestibular input.
If you were to purchase a similar product to install within your home, you would probably spend several hundred dollars. Making a platform swing can save you money, as well as become an inclusive activity for the whole family in building the swing together.
You will also need:
hand drill with bit large enough to make a hole to fit the rope
carpet - we used a bath mat from Wal-Mart, but you can buy scrap carpet or measure to fit your board exactly
staple gun and staples
a sturdy area either in your home or outside to place swing with lots of room for movement.
First, measure your board so that your holes are even on both sides and ends of your platform.
Once measured, position your drill straight above your marked spots and drill 4 holes into each corner. We measured about 2 inches away from each side for support reasons as well as to keep the wood from splinting.
Once you have your four holes drilled, staple your carpet square to the top of your swing. Since our builders used a bathmat, the carpet piece did not fit entirely around the piece of board. If you want to cover the board entirely, you will need to cut circles out over where your holes are and staple the carpet underneath.
Cut the rope into two pieces (ours were 11 feet each) and loop through the holes on each end lengthwise. Use a lighter or matches to seal the ends of the rope after knotting tightly. We doubled our knots for extra stability and thickness.
Install the eye screws first to a secure beam. This swing was installed in a basement and the eye screws were screwed into the support beams on the ceiling.
The quick links are then attached to the eye screws and the rope is looped through the links. Now that your swing is put together make sure that a responsible adult tests the swing for strength and durability.
Once you determine that your swing has been installed successfully, and you've tested it for strength, enjoy!
Another article in our series of things NTs say about Autistics. Tikatia Morris is the marketing director at NeuroDiversity Consulting LLC. Learn more here and check out the intro to the series as well as our article on discipline.
"But he's so smart!"
"Are you sure she isn't just faking it?"
"He doesn't look autistic."
"Aspergers...that's just a little socially awkward."
By: Tikatia Morris
In 2008, radio show host, Michael Savage had this to say about autism:
"fraud, a racket. ... I'll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is. What do you mean they scream and they're silent? They don't have a father around to tell them, 'Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don't sit there crying and screaming, idiot."
Here is how one adult with autism described how it feels when a person doesn't believe in the diagnosis:
"As if living your whole life incapable of being normal no matter how much effort you put in isn't bad enough, there are people that try to convince you that the condition you're diagnosed with doesn't exist and that you're just a social failure."
Autism is, by definition, a spectrum disorder. Individuals with autism have strengths and weaknesses, just the same as their neurotypical counterparts. Some individuals have excellent verbal skills, are sociable, and enjoy being around other people regularly. This does not invalidate their diagnosis. This simply means that they have those skills as a strength.
The DSM-IV lists 5 separate diagnoses under the umbrella of Autism Spectrum Disorders. These are: Autistic Disorder, Asperger's Disorder, Pervasive Developmental Disorder Not Otherwise Specified (including Atypical Autism), Rett's Disorder, and Childhood Disintegrative Disorder. Each includes it's own specific diagnostic criteria and each, while under the umbrella of Autism Spectrum Disorder, is unique unto itself as well. Since there are 5 differing disorders under this one umbrella, it wouldn't be much of a stretch to assume that each disorder differs from the others not only in diagnostic criteria, but also in severity of symptoms; hence the term Autism Spectrum Disorder.
As a parent, I've often encountered comments like those quoted above from not only neurotypical strangers, friends, and family, but also from professionals such as my son's teachers. When he "perfoms" well in a school setting (mostly due to his overall anxiety from being around that many people) I find myself having to prove his diagnosis to the professionals within that school. They often end up trying to remove services claiming that he doesn't need them even when he's obviously (to me anyway) performing so well because those services are in place.
In our personal world, we've come against opposition from friends, and family members alike. The frustration that ensues as a parent having to prove my son's diagnosis is immeasurable, and I'm sure that my son, were he able to explain it, would say that he is not faking his interpretations of his surroundings, nor is he simply misbehaving for the sake of attention or because he's just being a putz, as Savage claims about those on the spectrum.
Even parents of autistics can fall prey to disbelief. As Jim Sinclair point out in his essay, “Don’t Mourn for Us”, parents begin on a path of either love and support or rejection the moment of their child’s diagnosis. Sinclair makes the distinction that the source of parents’ grief at an autism diagnosis has, “NOTHING to do with autism, it regards the inability to have the ‘expected relationship’ with their child." When parents continue to misplace this grief onto their child, avowing to wipe this ‘abomination’ off of the face of the earth, they are also stating that their, “greatest wish is that one day [autistics] will cease to be, and strangers you can love will move in behind our faces."
When parents finally come to terms with their child's diagnosis, and accept that child for who he or she is, there is still yet another level in our disbelief pyramid. There are then the parents within each group of diagnosis who may have the tendency to belittle another child's diagnosis simply because that child may present the disorder differently from their own child. For example a parent whose child is nonverbal may scoff at a child who is capable of speech that they don't have "real" autism. Parents of children who have these milder versions of autism may feel that they don't fit in with the parents of neurotypical kids, but that they also don't have the support of other parents within the autism community.
A major issue regarding autism is a lack of understanding and education, both on the parent and caregiver parts as well as on that of the neurotypical community at large. The changes proposed in the DSM-V may to help alleviate some of the skepticism and misunderstanding of autism spectrum disorders. The proposal is such that those five separate diagnoses will become one single diagnosis of Autism Spectrum Disorder with three distinct levels of severity. There is still a lot of debate within the autism community as to whether this proposition will end with positive results or negative.
In conclusion, educate yourself, your families and your communities; and as the saying goes:
"When you meet one autistic person, you've met one autistic person."