autism adults

9 Everyday Things That Young Adults with Autism May Struggle With

autism adultsIt seems obvious that young children with autism struggle with many tasks because of deficits with gross and fine motor skills, sensory processing issues, language delays and more. Naturally, this affects how they interact with their peers. In most cases, an autistic child receives support, therapy and modifications in school to assist with these struggles.

But what happens when you’re a teen or young adult with autism and you’re expected to simply “know” how to do certain things? It’s the little things in life that come easy to us that we take for granted. Once a child is out of school, resources dry up. Parents can teach life skills and social skills as best they can, but we can’t think of every possible scenario that might occur and help our transitioning children prepare for the challenges of adulting.

This list I’ve compiled is just a snapshot into some everyday situations that my children struggle with. Being less proficient at simple life tasks could profoundly affect the way they interact with the world.  As parents, we need to continually support and prepare our children. As emergency responders, we need to be aware of these types of everyday struggles, as they can cause a scene to go south quickly if misinterpreted.

  1. Haircuts / Grooming. My son has an extremely sensitive nervous system. Many times for no reason his body feels antsy and overactive, like a million bugs are crawling in his skin. Simple tags on clothing feel like cactus needles on his back. A light pat on the shoulder feels like a taser shock. Haircuts and trimming nails have been an issue with him from infancy. Now, at 15 years old, 9” taller than me and approximately 250 pounds, I can no longer strap him to a chair with belts to cut his hair (don’t judge!). He will fight me if I bring the scissors or buzzer near him. He isn’t being spoiled or malicious, it HURTS to get his haircut. He tries to behave if I bring him to a barber, but he can’t help the wincing and jerking reactions to what we consider a routine activity. As far as his nails go, I still have to wait until he is asleep to cut them! Responder tip: light touch could cause an extreme reaction.
  2. Driving / Night Driving. I don’t know that either of my children will be able to drive. I am going to work with my 19-year old daughter some more, but it is an extreme struggle for her. Her depth perception is skewed, making it seem like cars that are two lanes away are about to hit us. That can spell trouble on these already crazy Atlanta streets. My son simply doesn’t have the reaction time or ability to process simultaneous tasks in order to operate a motor vehicle. Another adult autistic friend of mine does drive, but finds night driving an extreme challenge. This is a simple task we take for granted. When I was growing up, the second you turned 15 you got your Learner’s Permit and your license followed as soon as you were eligible to take the test. As a parent, I am dealing with still having to chauffeur my children around as young adults. Responder tip: remember that someone with autism may struggle with depth perception, reaction time, multi-tasking and night vision. This increases the risk for MVCs.
  3. Making Phone Calls. I was shy as a child. Making calls to businesses or even a new friend was terrifying. Of course, there were no cell phones or texting back then so you HAD to interact with people on the phone… without caller ID! Nervousness and shyness are not the same struggles as my kids have on the phone. When we are at a restaurant or store I make them order or pay to help foster interactions with strangers. Phone calls are difficult. It takes writing out a list of questions with all possible outcomes in order to successfully make a quick call to find out something about a store’s hours or make an appointment. Now, picture how many times we, as adults, have to call our insurance company or a utility company for an error on our bill or a coverage question. Think about the automated menu, what number to press, getting someone live finally and trying to explain your situation, getting told incorrect information and having the ability to ascertain that you can get a better outcome if you ask for a manager or escalate the issue. I picture my daughter trying to argue with one of those companies that automatically charges you for products you canceled… noooooope. Responder tip: be prepared for nervousness and complete shutdown over the phone.
  4. Strangers Knocking on the Door. This is a BIG ONE. It took some major conditioning, social stories, and active drills to get my son to stop opening the door to everyone! I work nights and sleep during the day. There are myriad times when my children are the ones awake to hear someone at the door. Unfortunately, this neighborhood has experienced multiple break-ins and gunshots are often heard nearby. It has been my experience that people with autism are typically trusting and take people’s word at face value. I have had someone knock on the door telling me they were someone I knew, all the while shaking and turning the knob trying to force the door open. I was fortunate to be home and to be the one on the other side of the door with my Glock 36. What if it were my son? I shudder to think of potential outcomes if my children readily open the door to strangers. Responder tip: identify yourself clearly when knocking on a residence door. Be prepared for anything.
  5. Accident or Injury. My daughter’s autism manifests in a lot of anxiety and OCD. This is a good trait when it comes to safety. I’d much rather her call me for every little concern than to do what my son does. He spends a lot of time in his room on his computer. If he injures himself in any way, he simply shuts down right where he is. He doesn’t think to “come get mom” or call for help in any way. Nor does he know how to handle an injury. So he sits there in pain, or in some cases, bleeding, and no one knows. Most of the time my daughter and I frequently check on him in his room, kind of like making rounds, ha ha. BUT what about when I’m at work or asleep? He will not come wake me. The thought of a more serious accident or injury occurring without him understanding to call me, or his sister – or 911 depending on the severity – is terrifying. We continue to work on this daily. Responder tip: do not discount a behavior because a “typical person” should know better.
  6. Job Interviews. It’s that time… my children are about to be 16 and 20 in March. They were fortunate enough to get a private part time job briefly last year helping out a lovely lady with some yard work. It was a nice introduction to exchanging hours for cash. It was flexible. The work was hard, but the employer allowed for frequent breaks and many questions. There really isn’t a resource that helps neurotypical people prepare for job interviews, let alone people with autism. When coaching my children for interviews it’s hard to predict some of the non-standard questions that might come up. Some common autism traits include blunt honesty, lack of a conversation filter, and the inability to recognize any kind of sarcasm, idioms, etc. Phrases like “hold your horses” and “killing two birds with one stone” are taken at face value. This makes job interviews a challenge. Answering questions, knowing the right things to say, and abstaining from over sharing are tasks that do not come naturally. It’s another obstacle to overcome. Responder tip: speak slowly and clearly, and only use words that have one meaning if possible.
  7. A Routine Traffic Stop. My children do not drive, as I wrote earlier, but when doing some research I read a story about a young adult that got pulled over for some erratic driving. The officer asked him if he took any drugs. The young man, 23, took his vitamins that day. He knows that you buy vitamins in a drug store; he said yes, he took drugs, meaning his daily vitamins. He was immediately cuffed and taken into custody. The young man did not understand what was happening. It wasn’t until he was able to call his caregiver that the situation was straightened out. Responder tip: you may have to dig a little deeper with routine questions to get the full picture.
  8. Hygiene / Bathroom Issues. There are no parenting books on potty training a man-sized teenager. Yeah, not fun to discuss. My son had a bowel obstruction a few years ago that was traumatic for him. As a result, his body automatically holds it when he has to make a bowel movement. His sensory issues prevent him from feeling the urge to go until it is too late. And it becomes a self-perpetuating cycle to boot – he fears the experience to be painful so he holds it, which causes the experience to be painful. And round and round we go. GI issues are already commonplace with autism, as are food allergies and sensitivities. I have read on many parenting forums that my son’s issue is not unique. So as a responder in the field, you may encounter young adults that have bathroom issues. Responder tip: do not assume anything about the household situation until you get a full clinical picture.
  9. Picky Eating. “Children won’t starve themselves if you serve them food they don’t like.” Ha! Dr. Spock and all the other parenting experts don’t know my daughter. As a toddler she went five full days without eating when I tried to get her to eat a simple meal that was outside of her three acceptable foods. In fourth grade, she went on a camping field trip with her classmates. She was not allowed to bring her own food. I figured that being around her peers, being outside and doing activities, and not having access to her favorite foods would mean she would get over her picky eating. Silly rabbit… she didn’t eat or drink for the entire three-day trip. She is about to turn 20 and eats four foods. And God help us, they must be the right brand! If it’s pizza the crust can’t be thin, it can’t be too cheesy, the pepperoni can’t be the spicy kind… she has the palate of a sommelier. This is commonplace with autism because it’s not just about “kid approved” foods vs. healthy dishes. It’s about routine, sensory issues, texture, food allergies or sensitivities… there’s so much more here than meets the eye. Going out to eat, social gatherings around food… these are routine to us. But it is a source of anxiety for my daughter. I try to let her view the menu online if we are going somewhere. If there is nothing she likes I let her make something herself and bring it. It puts the ownership on her. It is still a struggle for her and it can be awkward in social situations, making her feel yet another reason that she is “too different” to fit in at times.

Adulting is hard as it is! But these are some standard, everyday activities that my children currently struggle with. How about you? What are some of your experiences that didn’t make my list? Or if you can relate to any of these, what things have worked in your household? Be sure to comment below!

 

image courtesy of cultureofempathy.com

Autism, Depression and Suicide

image courtesy of cultureofempathy.com

image courtesy of cultureofempathy.com

Today I read a very moving post on EverydayAspergers.com, a blog that helps raise
awareness about Asperger’s and females. The entire article really opened my eyes to my 17 year old daughter’s mental and emotional struggles as she tries to make her way in this world, yet feels the need to apologize every day for simply existing.

I was always bewildered by her low self-esteem, as I raised her with abundant compliments, unconditional love and unlimited support. I made it known to her that her voice and opinions MATTER and are validated.

Being raised in a very abusive and dysfunctional family setting myself, it makes sense to me why I struggled to overcome worthiness issues for so many years. But my beautiful, brilliant, quirky and ridiculously talented little girl faces similar obstacles, and after reading this I understand a little bit more about Asperger’s and the female brain.

Here are a few of the highlights that really stood out to me:

    The times I need to curl in a corner and cry with the imaginary arms of someone around me, and then sobbing uncontrollably, as I realize like all the times before, there is no one there.

The truth of my isolation and how no one will ever be able to slip into my mind and understand.

Counting the minutes until I can sleep, hoping the sleep will help me escape the increasing thoughts of fear.

Realizing again and again I am different in a world that seems riddled with sameness. Understanding that the depths of me are so deep that even I get lost with no hope of escape.

Feeling like an alien. Feeling like an alien. Feeling like an alien.

The way in which I step back as observer and watch myself freak out and wig out and create chaos out of nothing, but still being unable to stop myself.

Thinking anything I say isn’t needed, is irrelevant, or will just bury me and leave me alone.

You can read her whole post here.

This prompted me to do some additional research on Asperger’s and suicide.

On the Spectrum News website I learned of a published study from The Lancet Psychiatry, revealing that two-thirds of a group of adults diagnosed with Asperger syndrome said they had thought about committing suicide at some point, and 35 percent had made specific plans or actually made an attempt.

35 percent!

For those with Asperger’s, struggling their whole lives to fit in can take a toll on them emotionally. Add to that autistic cognitive patterns such as the tendency to perseverate or get stuck on a particular line of thought and it can directly lead to vulnerability toward suicide.

What makes an Aspie teen a higher risk? AACC.net says the number one reason is social isolation and rejection. Aspies tend to have decent friendships in elementary school, but there is sudden shift in middle school.

Peers start noticing differences in behaviors; friends from elementary school suddenly distance themselves, which can be confusing (and terrifying) for the Aspie, who wonders why these people were friends in 5th grade but not in 6th.

Adolescence is a time students are seeking identity and peer approval. But odd mannerisms, avoiding eye contact, lack of filters for appropriate conversation, not understanding sarcasm or idioms, and constant interruption are just some of the things that cause an Aspie to be shunned or bullied as a teen. Increasingly harder schoolwork and being left out of group projects or teams can trigger anxiety and depression.

Tony Attwood, a clinical psychologist known world wide for his knowledge of Aspergers Syndrome, speaks about the Aspie tendency to catastrophize, making it challenging to regulate their emotions. Additionally, the amygdala of an Aspie tends to be 10-15 % larger than in neurotypicals, therefore inflating the “danger alerts” in the fight/flight/freeze system.

This means something that is a 1 on the scale of a neurotypical person may easily register as a 10 to an Aspie. As the brain sends signals that start the sympathetic nervous system racing, the person with Asperger’s may be the “last to know” about their heightened emotional state, making them just as surprised as an observer when emotions and behaviors have escalated.

How Can We Help?

The goal for crisis intervention is to increase the person’s sense of being emotionally supported as well as their psychological sense of possible choices.

Autism Help lists some the following strategies:

    Establish rapport (e.g. ‘I’m listening and I want to support you’)

Explore the person’s perception of the crisis

Focus on the immediate past (e.g. a recent significant event or problem) and immediate future

Develop options and a plan of action

Increase the options available to the person and the number of people available to help

Try to involve appropriate people in the person’s natural support system

Encourage them to develop a plan including resources and support in the immediate future. Write down the steps of a personal safety plan and suggest the person carry them around for fast access to support.

Much like the Disaster Psychology module taught in CERT, you want to avoid certain phrases when communicating, such as, “Everything will be fine, don’t worry,” and “Come on, it isn’t that bad…” False reassurances, minimizing feelings, and intrusive questioning are inappropriate responses for individuals at risk for depression and suicide.

Instead, practice active and reflective listening techniques when the person shares their feelings with you and paraphrase and summarize often.

 

best buddies

Best Buddies Program

best buddiesI recently heard about a great program that has my son’s name written all over it! (Naturally, when I told him this, he literally looked for his name written all over the program page. It wasn’t there :))

Contrary to popular belief, my son can be very social. By social, I mean friendly and open-hearted when meeting new people. However, if after an introduction the conversation doesn’t revolve around computer code or video games, there is an awkward disconnect.

He has friends all over the world that he Skypes with. Yes, I’ve seen the video chats and know 100% that his friends are real kids his age and not some creepy 50 year-old man pretending to like Minecraft! J has been hacked before and that was super scary!

Anyway, our problem is that my kids homeschool and I work outside of the home part of the time. We miss a lot of homeschool gatherings due to my hours, leaving my kids little opportunities to meet peers. Additionally, being a single parent, I tried to apply for Big Brothers Big Sisters for my son so he has a positive male role model in his life. I was told there was a 4+ year-long waiting list. Whoa! Seriously?

That’s why I was absolutely THRILLED to see this come across my inbox. Although this post refers to the Atlanta chapter, you can go to their website to see if there are programs in your area, as it is an international organization.

The Best Buddies program connects individuals that have intellectual or development disabilities with students from Emory. Each participant will be matched with either one or two Emory students to form a “buddy pair/trio.” The program encourages buddies to contact each other several times a month in addition to hanging out at chapter events. You can also request that your son or daughter to be matched in a same-gender pair.

Once paired with a Buddy, they meet as a chapter once a month during the school year for activities such as movie screenings, arts and crafts, field days and more. Events are typically held on Sunday afternoons on or near Emory’s campus, located in Druid Hills. These usually last for two hours. The first event will likely be in mid-September.

As a result of their involvement with Best Buddies, people with IDD secure rewarding jobs, live on their own, become inspirational leaders, and make lifelong friendships.

Online registration for the 2014-2015 school year is now open. If you are interested, you may register your son or daughter to participate by clicking this here (select Emory University as the chapter).

If you are interested in volunteering, click here.

I will be reporting back on J’s progress once the program is in full swing! Perhaps I will see you there.

SOA Siblings

5 Ways to Include Neurotypical Siblings

SOA Siblings“It’s not fair! You always talk about Autism, Autism, Autism! You always write about him on your Blog and put his pictures everywhere!”

My firstborn isn’t playing the favorites card, she’s a little sensitive about Autism. Especially since my website, training classes, workshops and marketing materials use stories and facts about her brother as their framework. Sure, I can remind her about all the special privileges she receives as the eldest and the times we go places together without her brother. But that isn’t what she wants to hear. She wants to know that she’s valued, unique, and most of all, heard.

Here are some ways to make sure siblings feel included.

1. Don’t keep them in the dark.

The unknown is scary to children – especially when it’s surrounded by energy that may be tense and anxious. They are extremely sensitive to your feelings, so sugar coating or avoiding the subject of Autism in the home causes disharmony instead of protecting your child’s feelings.

Additionally, you should be open (in an age appropriate way) about what’s behind certain behaviors and that they are rarely, if ever intentional. Impulsivity and Sensory Processing issues can be hard to explain, but there are some amazing children’s books out on the subject of siblings and Autism. It’s a great place to start.

2. Consistent rewards.

It’s easy to get caught up in praising your child with Autism for every mark of progress and milestone. It is necessary. You may be missing the fact that the sibling is also counting every reward… and if the score isn’t evened they will remember.

Find a way to celebrate and recognize every achievement from all of your children.

This can also go the other way: many times my daughter will feel that her brother doesn’t get a just punishment for something she may have gotten in trouble for previously. Situations like that can indeed be a sticky-wicket, as your child with ASD rarely breaks rules intentionally. Unwanted behaviors still need to be addressed, and it helps to explain to siblings that discipline may be unique to each family member but no one is “getting away with it”.

3. Sibling-only time.

Often parenting our child with Autism requires an unequal amount time and energy for that child. It’s so important to schedule regular one-on-one time with your neurotypical child. Whether it’s a ritual of ten-minute blocks each night before bed or a once a week “girls night out” (in my case it’s my daughter), this time is to be treasured together.

4. Perspective and participation.

There are times when I’m truly stumped on one of my son’s behaviors that affect the entire family dynamic. Without sending her the message that I need her to solve the problem, sometimes I ask for my daughter’s perspective. She can throw some fresh ideas on the table that I may not have considered. Again, I never make her participate if she doesn’t want to or cause her to feel that she has to have the solution. She does appreciate that I value her opinion and viewpoint.

5. Support and expectations.

It’s important for siblings to feel that they are not alone in their experiences. There are many sibling support groups to share their struggles and feelings, but don’t force it. In our case, my daughter had a good time visiting one of our local groups but quickly discovered that being with people that focus on talking about her brother still makes her feel like the world revolves around him. She flourishes when involved in groups or classes that are uniquely hers, like her art community and comedy improve classes.

Equally as important, do not expect your child to be overly responsible for the child with Autism. Unrealistic expectations can lay an unbearable amount of pressure on siblings. This isn’t a free pass to skirt all family responsibility; check in often and encourage open communication throughout the journey.

What are some ways that you keep siblings out of the shadows and keep things “fair” in your house? Share by commenting  below or on the SOA Facebook page!

autism monkey joes

Autism Resource Fair and Monkey Joe’s Gives Back!

I’ve got two fantastic announcements for my fellow Atlantans!

This Saturday, join One DeKalb and Center for Leadership in Disability at the DeKalb County Resource Fair. It’s an opportunity for families of children and adults diagnosed with Autism to learn about and connect with agencies and organizations that provide Autism services and supports for DeKalb County residents.

You can come visit me at my booth – I’ll be talking about Autism Disaster Preparedness and Autism Safety at home. I’ll have an example of a 72-hour Disaster Kit and will be raffling off a special gift!

Remember, this Saturday, April 27

10:30 am – 1:30 pm at the Manual Maloof Administration Building  in Downtown Decatur

1300 Commerce Drive | Decatur, GA 30030

To register click here or contact Donna Johnson at 404-413-1427

I hope to see you there!

___________________________________________________________________

Monkey Joe’s Lawrenceville gives back to the community with Special Needs Night!

Every third Thursday of the month from 6 – 7:30 pm Monkey Joe’s closes its doors to the general public and welcomes special needs kids aged 12 and under and their siblings. Admission is FREE!

As you can see here, Justin had a blast!

As a parent of a (loud) child with Autism, I took great comfort in knowing that my son and I were not going to be kicked out of a public place because he was screaming, running around incessantly, or needed a sensory break. We were greeted with a warm welcome and checked in with frequently during our visit.

I love what Monkey Joe’s is doing for the special needs community – I certainly hope more businesses are inspired by their Special Needs night.

We hope to see you there for their next Special Needs night on May 16 at Monkey Joe’s Lawrenceville | 665 Duluth Highway | Lawrenceville

Call 770-338-7529 for more information!

 

My Top 10 Autism Support Tools

As you know, I’ve seen incredible progress in my son during the past five years. I am happy to report that he has never undergone any traditional therapies outside of the home; everything we have done together on this amazing journey was created from my research and personal connections made over Twitter, LinkedIn or Facebook. These connections led to expert interviews and the introduction to some really unique tools that made a huge difference in our lives. Here are my current favorites (in no set order):

Chewelry - Kid Companions is a chewable and wearable fidget that is safe, stylish and effective. It’s the perfect alternative to fidget toys and chewys and worn as “chewelry” is less-than-discreet.

This awesome product keeps my child from destroying costly toys and clothes and actually helps him focus and stay on task!
Calmer By Nature DVDs and CD – With no music or voiceovers – only the raw sounds of nature – the film helps with Stress, Anxiety, Insomnia, Sensory Problems, Alzheimer’s, Dementia, Autism, Sensory Processing Disorders, Cognitive Behavior Therapy, ADHD, and Mental Illnesses. In addition to helping Justin get relaxed at bedtime, it also:

  • Calms him before an outing he may be feeling anxious over
  • Redirects him during times of high stimulation
  • Provides him with short, 10-minute “cool down” times when he needs a sensory break
  • Gives him ideas for drawing and video creation projects
  • Starts conversations about the wildlife we see on the film

Yoga Ball - I bought my yoga ball years ago as part of my never-ending fitness research and it has been such a versatile staple in my home! From traditional use in my fitness routines to my daughter using it as a “dinosaur egg”, my son rolling around on it, and its employment as bedtime proprioceptive tool… it was the best $25 I ever spent!

Many times our evening ritual consists of “hot dog”: rolling him up in a blanket and using the yoga ball for deep compression on his back. We use different patterns as “toppings”; like circles are called onions, vertical rolling is called ketchup, etc. This is an instant calming tool that never disappoints.

Sandbells - These are our favorite fitness accessories when we work outside – we do overhead carries, throws, passes, and much more! They are safer than dumbbells and offer a sensory experience to boot!

DSi XL – Many parents would argue that video game systems are not a support tool. Here’s why I encourage my son’s use of his DSi XL: Flipnotes. He creates videos using an application that mimics old-fashioned, frame-by-frame animation. Sometimes they are 800+ pages long. He then adds music and voices to these videos and posts them in his Flipnote community, where his fellow creators rate and share them. It’s really neat to see the patience and detail that goes into the creation of these animations!

Digestive Enzymes/Probiotics – These are not a replacement for a diet free of gluten and casein (and other common culprits for food sensitivities like soy and corn!), however digestive support is essential in children on the Autism spectrum. There is a direct link between digestion and behavior. To be completely transparent, we are not on a 100% GFCF diet but we do our best! These enzymes and probiotics help step in with support where we fall short with diet alone.

EnListen® - With all the alternative, natural and creative strategies I try at home to help improve my sons symptoms and behavior deficits, the one thing I cannot do for him is change the way he processes sound! Sound Training has been such a gift and blessing in our house. While it is not a magic bullet by any means, the gains I have seen on a physical, cognitive, and adaptive level have been unmatched.

Social Media - As parents we often throw our entire being into helping those we love,  especially our children. The one thing we forget is that we need support, too! I have met some incredible people on unique but similar journeys over social media that I never would have encountered otherwise. I personally want to thank every single person that has connected with me on the social web. Your presence in my life – regardless of capacity or length of time – has made my universe a better place.

Signing Families - Louise is one of my favorite ladies on the Internet! One day we will meet in person and I bet it will be like we’ve known each other for years :) She has been teaching American Sign Language for more than 20 years to families with hearing and non-hearing children, college students, staff at public and private school systems and businesses. She also shares one of my other passions and provides materials to Emergency Responders.

Sign language has opened myriad doors for my son in regard to communication. I believe American Sign Language can give a voice to all who struggle with language for many reasons.

EFT - A little more “alternative” than some other techniques, EFT can help parents overcome limiting beliefs, fears, and frustrations, as well as deal with any grief or overwhelm that accompanies have a special needs child. I have also worked with my son directly and helped him break through a huge block he had with self esteem. It may or may not be for you, but you’ve got nothing to lose if you want to check it out!

Many times we also do EFT while listening to Jeff Gold’s Escapes… another great calming and relaxing CD of original music.

What are your favorite tools? Do you use them at home or outside of the house?