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This is Day 18 in the series: 31 days on Living with ADHD, Autism and Sensory Processing Disorder: What We Have Tried, What Has Worked, What Hasn’t Worked, and Never Giving Up.
For forever it seems all the therapists have been telling us Mr Rockstar does not have autism. Even though he had a speech delay, even though he stuttered, even though he has sensory issues (almost all kids with autism struggle with SPD but a child can have SPD and not be autistic), yet none of them believed he had autism. This summer as we started seeing the psychiatrist that specialized in ADHD and Autism, we got the first diagnosis of autism. He is not 100% sure on the diagnosis but the doctor says Mr Rockstar’s fixation on certain things and his inability to let anything drop are signs of autism. He thinks much of Mr Rockstar’s aggression and behavioral issues are indicative of high functioning autism. Our behavioral therapist has been leaning towards an autism diagnosis (along with the ADHD and SPD) as well. The longer she has seen him, the more she is sure that he must be autistic.
The reason it has taken us so long to get the diagnosis of autism, even though Mr Rockstar clearly has had markers of autism for years, is that on his good days Mr Rockstar can make eye contact, he is very social, can carry on a conversation, etc. If your child CAN make eye contact and IS social autism at times autism is dismissed out of hand.
What is High Functioning Autism?
In the past high functioning autism would have been labeled Aspergers Syndome and was classified as a different neurological disorder than high functioning autism. Mr Rockstar’s psychiatrist said recently this distinction was eliminated and now Aspergers is just lumped in with high functioning autism.
I found this great list on myaspbergerschild.com of symptoms of children with high functioning autism (previously called Aspergers). I have highlighted in blue the ones Mr Rockstar clearly struggles with.
Emotions and Sensitivities:
- An emotional incident can determine the mood for the day.
- Becomes overwhelmed with too much verbal direction.
- Calmed by external stimulation (e.g., soothing sound, brushing, rotating object, constant pressure).
- Desires comfort items (e.g., blankets, teddy, rock, string).
- Difficulty with loud or sudden sounds.
- Emotions can pass very suddenly or are drawn out for a long period of time.
- Inappropriate touching of self in public situations.
- Intolerance to certain food textures, colors or the way they are presented on the plate (e.g., one food can’t touch another).
- Laughs, cries or throws a tantrum for no apparent reason.
- May need to be left alone to release tension and frustration.
- Resists change in the environment (e.g., people, places, objects).
- Sensitivity or lack of sensitivity to sounds, textures, tastes, smells or light.
- Tends to either tune out or break down when being reprimanded.
- Unusually high or low pain tolerance.
- Difficulty transitioning from one activity to another in school.
- Difficulty with fine motor activities (e.g., coloring, printing, using scissors, gluing).
- Difficulty with reading comprehension (e.g., can quote an answer, but unable to predict, summarize or find symbolism).
- Excellent rote memory in some areas.
- Exceptionally high skills in some areas and very low in others.
- Resistance or inability to follow directions.
- Short attention span for most lessons.
Health and Movement:
- Allergies and food sensitivities. maybe?
- Apparent lack of concern for personal hygiene (e.g., hair, teeth, body odor).
- Appearance of hearing problems, but hearing has been checked and is fine.
- Difficulty changing from one floor surface to another (e.g., carpet to wood, sidewalk to grass).
- Difficulty moving through a space (e.g., bumps into objects or people).
- Frequent gas, burping or throwing up.
- Incontinence of bowel and/or bladder.
- Irregular sleep patterns.
- Odd or unnatural posture (e.g., rigid or floppy).
- Seizure activity.
- Unusual gait.
- Walks on toes.
- Walks without swinging arms freely.
- Aversion to answering questions about themselves.
- Difficulty maintaining friendships.
- Difficulty reading facial expressions and body language.
- Difficulty understanding group interactions.
- Difficulty understanding jokes, figures of speech or sarcasm.
- Difficulty understanding the rules of conversation.
- Does not generally share observations or experiences with others.
- Finds it easier to socialize with people that are older or younger, rather than peers of their own age.
- Gives spontaneous comments which seem to have no connection to the current conversation.
- Makes honest, but inappropriate observations.
- Minimal acknowledgement of others.
- Overly trusting or unable to read the motives behinds peoples’ actions.
- Prefers to be alone, aloft or overly-friendly.
- Resistance to being held or touched.
- Responds to social interactions, but does not initiate them.
- Seems unable to understand another’s feelings.
- Talks excessively about one or two topics (e.g., dinosaurs, movies, etc.).
- Tends to get too close when speaking to someone (i.e., lack of personal space).
- Unaware of/disinterested in what is going on around them.
- Very little or no eye contact. – for Mr Rockstar it depends on if it is a good day or bad day
- Causes injury to self (e.g., biting, banging head).
- Difficulty attending to some tasks.
- Difficulty sensing time (e.g., knowing how long 5 minutes is or 3 days or a month).
- Difficulty transferring skills from one area to another.
- Difficulty waiting for their turn (e.g., standing in line).
- Extreme fear for no apparent reason.
- Fascination with rotation.
- Feels the need to fix or rearrange things. – YES Mr Rockstar is obsessively rearranging the house and constantly redecorating
- Fine motor skills are developmentally behind peers (e.g., hand writing, tying shoes, using scissors, etc.).
- Frustration is expressed in unusual ways.
- Gross motor skills are developmentally behind peers (e.g., riding a bike, skating, running).
- Inability to perceive potentially dangerous situations.
- Many and varied collections.
- Obsessions with objects, ideas or desires.
- Perfectionism in certain areas.
- Play is often repetitive.
- Quotes movies or video games.
- Ritualistic or compulsive behavior patterns (e.g., sniffing, licking, watching objects fall, flapping arms, spinning, rocking, humming, tapping, sucking, rubbing clothes). – maybe ….sometimes Mr Rockstar has a small tic.
- Transitioning from one activity to another is difficult.
- Unexpected movements (e.g., running out into the street).
- Unusual attachment to objects.
- Verbal outbursts.
Linguistic and Language Development:
- Abnormal use of pitch, intonation, rhythm or stress while speaking
- Difficulty understanding directional terms (e.g., front, back, before, after).
- Difficulty whispering.
- Makes verbal sounds while listening (i.e., echolalia).
- May have a very high vocabulary.
- Often uses short, incomplete sentences.
- Pronouns are often inappropriately used.
- Repeats last words or phrases several times.
- Speech is abnormally loud or quiet.
- Speech started very early and then stopped for a period of time.
- Uses a person’s name excessively when speaking to them.
On his good days less of these apply. On his bad days all the new highlighted blue apply. For example, on his bad days Mr Rockstar not only can’t make eye contact but he also loses the able to communicate period. Bad days are triggered by illness, sensory sensitivities (loud noises, bothersome clothes/environment), poor sleep, and all sorts of other things we are still trying to figure out. It can be so frustrating as a parent when he is having a bad day. He is melting down over everything and he can’t even tell me what is bothering him.
High functioning autistic children have major meltdowns over little things and can’t let it go. They also can have minor meltdowns over major things. You just never know what it will be. Their reactions don’t fit the situations. As a parent you are walking on egg shells trying to prevent a melt down. It is hard to be fair between all your kids. I find myself deferring to Mr Rockstar (like what playground we will go to, or where we will take our walk to, or what we will eat for dinner) over his sisters simply because sometimes I just don’t have the energy for the meltdown it might trigger. Read more about Why Even Good Days Are Hard.
Are You Autistic?
Some recent data has suggested that children with parents in more technical-oriented vs people-oriented professions are more likely to have children with autism. If both parents are in technical fields their children are more likely to have severe autism. “Dads working in engineering are twice as likely to have a child with the developmental disorder while those in finance are four times more likely, the study found. “. Read more here.
This link between parental profession and autism rate was first suggested by psychologist Simon Baron-Cohen at the University of Cambridge, UK. “According to a theory he has been building over the past 15 years, the parents of autistic children, and the children themselves, have an aptitude for understanding and analysing predictable, rule-based systems — think machines, mathematics or computer programs. And the genes that endow parents with minds suited to technical tasks, he hypothesizes, could lead to autism when passed on to their children, especially when combined with a dose of similar genes from a like-minded mate1.” read the rest of the article on nature.com.
As I have mentioned before I am a Metallurgical Engineer. I only work a few hours a week consulting these days but when I am working it is usually doing technical data analysis looking for patterns in data sets to see if I can discover what manufacturing step is driving certain quality issues. Asleep yet?!? LOL I love it even though it is mostly hours of Excel spreadsheets and data crunching. Hubby is an electrical engineer and also very math minded. So Mr Rockstar didn’t have much of a chance. Between being a boy (boys are much more likely to be autistic than girls) and having two engineering parents he was doomed.
Out of curiosity we found a couple of Adult Autism Screening Tests. Hubby was labeled a “problem” child in grade school and was probably ADHD if not also autistic. I am a recovering introvert (I am sure I will always be an introvert but at least now I don’t feel sick at the thought of talking to my boss or going meet some new moms at a playdate). It is tricky to diagnosis high functioning autism in adults, but these tests give you and idea of your autistic tendencies. You can find the first one here. I included a screen shot if you are curious what the questions are:
It is a quick and easy one. On this test I scored a 17 which is Maybe Autistic (scores of 14-30 are categorized as maybe autistic).
The second adult screening test has 50 questions and gives you the option of definitely agree, slightly agree, sightly disagree, and definitely disagree. As an engineer I like this rating system a lot better 😉 It only takes a few minutes to take as well. The second test is here. I scored 29. Adults that have been previously diagnosed with autism score 32 on average on this test.
So for both my tests I scored maybe autistic. Hubby scored even higher than me on both tests. Isn’t it ironic that parents that struggle with autistic tendencies are more likely to have autistic kids and have to help guide those kids?
There are a ton of resources out there to help parents with autistic children. Some that I have found helpful:
- Apps. There are so many good apps out there these days The app I use to track Mr Rockstar’s meltdowns was designed with autistic kids in mind. Mr Rockstar’s therapists have also been able to recommend different apps (for speech, learning turn taking, letter sounds, color, etc). Since autistic kids tend to be drawn to electronic media more so than the average kid apps can be pretty powerful tools WHEN used appropriately, supervised, and limited.
- The Temple Grandin movie does a good job of portraying what raising an autistic kid can look like. Thankfully Mr Rockstar hasn’t been as difficult as Temple was for her mother. You can also read Temple Grandin’s book “Thinking in Pictures”. Plus there are a ton of Youtube videos of Temple speaking about autism. Temple’s story helps you understand what might be going through your kids head plus hope to never give up finding the next resource they need and pushing them to learn.
- A Thorn in My Pocket: Temple Grandin’s Mother Tells the Family Story is a great book for parents to read who are raising autistic kids. It will make you cry but it is honest and real and makes you feel less alone. There is hope.
- I have been enjoying watching Parenthood the NBC show. In the show there is a boy named Max who has high functioning autism. He does a good job portraying it….at least the scenes and acting resonate with what we struggle with on a daily basis with Mr Rockstar.
- Local Autism Support Groups
- I just found www.myautismteam.com. It looks like a great way to find local resources other parents in your area have found helpful. Has anyone tried this? It is almost like a social networking group for parents with autistic kids where among other things they can share their experiences with local school, doctors, etc.
We are pretty new to the autism diagnosis. I would LOVE to know of other resources you have found helpful.