The Side of Autism The Media and Others Don't Want You to See
By Anne Dachel
All of us have had those difficult moments while raising an autistic child. Often those around us simply don’t understand what we’re up against. I’ve had lots of experience with this because my son is 25 with Asperger’s. Even very high functioning kids have their idiosyncrasies. Much of my son’s OCD behavior has improved over the years but when he was little, he had so many rigid rules for what he would and wouldn’t do, it drove me to distraction. There weren’t a lot of kids who acted like him back then, which made matters even worse and the message I got was clear: it must be the mother’s fault that he acts like he does. I’ll always remember one Christmas when a relative, in exasperation, shouted at me, “When are you going to teach him the meaning of the word, NO?” The struggle is made even worse by all those who are quick to judge and criticize.
Recently an incident happened to a friend of mine, Maurine Meleck, that made it clear that caregivers still have to explain autism to others. Maurine lives in North Augusta , S.C. where she raises her grandson Joshua (14), who has autism. Recently, she was taking care of both Joshua and his neurotypical brother, Conner (12).
Maurine explained what happened:
“Joshua had had some minor dental surgery while Connor was at my house recovering from the stomach flu. Joshua was at the dentist for only an hour, but he had been given a mild sedative to make him calm. He walked out light on his feet and had to be taken to the car by the nurse. Meanwhile, Connor called and was dying for ice pops. I decided to run into Publix, our closest grocery store. Josh was sleepy, but not asleep. I told him to remain in the car for 5 minutes while I ran in the store to get the ice pops. (Joshua takes part in many activities without me around and I was certain that he’d be able to handle my small request.) When I returned to the car after 5 to 8 minutes in the store, Josh was gone. I panicked and called out for him--ready to call 911 due to his sleepy state. Suddenly I heard a muffled sound say, ‘Grandma.’
“I said, ‘Where are you?’
“Josh answered, ‘I'm in the trunk.’
“Joshua had crawled into the trunk from the back of the car by opening up the backseat.
“Next I opened the trunk and he climbed out-oblivious to what he had done or the obvious possible consequences on a very hot day.
“As I am helping him out of the trunk, a woman is walking out of store and asks me, ‘What’s going on? Why is your child in the trunk.’
“I related the story as quickly as I could so she would not feel the need to contact anyone, and I drove away, hoping there’d be no repercussions. But by the time I arrived home ten minutes later, three police cars with lights going were at my condo.
“Policeman #1 said, ‘We just had every available patrolman out looking for your car. Someone called 911 and said you locked your child in the trunk of your car.’
“The officer asked what happened. ‘Why was your child in the trunk?’
“Okay, let me start from the beginning, I ran in…
‘The officer interrupted me, ‘We don't want to hear the story behind it--Did you or did you not lock your child in the trunk?’
“First of all, he's my grandson, and no, I did not lock him in the trunk.’
“The officer asked, ‘Why was he in the trunk?’ And every time I started to tell my story he stopped me saying, ‘I'll have to report this...’
“Finally I became exasperated and began talking as fast as I could before I was interrupted again. Of course I began with, ‘My grandson was vaccine injured,’ (the most important part of my long story).
“I then went into explaining all the things I was doing to help my grandson, and about how they could call 30 people right now who can tell them I would never do what the woman said
“Policeman #2 said, ‘No, no, we are not calling anyone.’ He then gave Joshua a lecture about the dangers of climbing into a trunk and finally they left. I feared they would call the Department of Social Services so I contacted a friend who phoned the police department and was able to convince them otherwise.
“I'd like to think that there's something we can all learn from this story and sadly, all I can come up with is that most of us have children who can be as unpredictable as the weather forecast. When others bear witness to this unpredictable behavior, they rarely have any understanding of the nature of autism so their behavior becomes just as unpredictable.
“It can be frightening. It can be a challenge, no matter how many years we've been raising our children or grandchildren, as in my case.”
Since we’re always being told about the need for AWARENESS, Maurine’s experience a good example of just what that means. When it comes to a child with autism, the unpredictable becomes the norm.
Anne Dachel is Media Editor for Age of Autism. Subscribe to her news feed at AnneDachel.com.
My son (with full-blown autism) had a meltdown at school and had to be restrained for his safety and the safety of those around him. His aide put him in a crouch hold, and when she decided he was calm enough to let go, he kicked out behind him and made contact with his foot to the side of her head. She ended up with a concussion, and I had to pick him up from school. By the time I got home with him, he had calmed down most of the way and I sent him to his room to finish getting calm. He had stopped screaming, and was playing with lego in his room when the doorbell rang and two police officers asked if they could come in. They had heard the 911 call (for the ambulance for the aide), and had come over to make sure everything was "ok". What struck me as odd was that they suggested taking him to the ER.
Our ER has an average wait time of 3-5 hours. The last place I would take my distressed child is the ER unless he was likely to die if I didn't. Not to mention that his aide was at the ER (also likely waiting 3-5 hours). It just seemed like a bizarre suggestion.
Posted by: Lily | August 13, 2012 at 07:28 PM
Thanks for sharing your story. I can understand it and it is nice to know that we are not alone. My daughter is extremely bright in many ways and most don't understand that anything is wrong. It can put us in a lot of uncomfortable situations.
However, I wanted to add that we see a lot of cute things too! My daughter has had problems sleeping and always has. The doctor ASSUMED it was nightmares (even after we told her it wasn't) and told her to come to us at night to tell us so we could comfort her. So she did. We heard about ponies, flying, etc and some real nightmares, but she couldn't distinguish between them. Finally we had a chat about nightmares and how, just because she wakes up, does not mean she had a nightmare. She didn't quite understand. She did remember that mommy told her she needed to be quieter in the night so not to wake everyone. LOL! She came into our room and whispers.... "Pssst... Mom wake up." I asked her why she was whispering and she said, "Because I don't want to wake YOU up." I couldn't stop laughing! It was so cute.
We still had to deal with what was a nightmare and what was not, but sometimes there is humor and a chance to connect using those moments. My daughter now knows why this was funny and still thinks this is hilarious. She loves to share the story... with random people and sometimes the back of their heads. :-) She's getting there. One day at a time.
Posted by: Friend | June 21, 2012 at 05:36 PM
There are people that hate people out there. They refer to human race as a virus on the planet. They'd be more than happy to see our species wiped out. The current population is 7 billion. I don't have a huge problem with the idea of population control but it the how that worries me.
Posted by: Sarah | June 20, 2012 at 08:08 PM
Raise you hand if you have ever been questioned by police due to something your autistic child did...or someone reporting thinking YOU did when you didn't...My hand is raised! Oh the joys of parenthood...
Posted by: Cheryl | June 20, 2012 at 03:04 PM
Pulling into my driveway today the radio announcer said there 340 billion people on the planet and average 150 pounds a piece sure adds a lot of weight to the planet.
What a bunch of bull .
So are we made of stuff from this Earth or did aliens come down and bring this extra weight with them????
There are people out there that hate people.
Posted by: Benedetta | June 20, 2012 at 02:18 PM
This incident could have actually happened with any child, autism or not. In reading it I was glad to know someone did care enough to call. Additionally it was something that can be explained. I personally would have said "My son has autism and slipped into the trunk because it was calming to him after having been sedated from oral surgery" end of story. If they decided to charge me, call CPS, so be it. We as care providers need to be prepared for those types of things really but also know most first responders go into the profession to assist people and they were there for the child in this case.
We carried cards with us, we handed them out as we carried our son kicking and screaming from public acitivities. It's something we've tried to educate parents on for years as well. This can happen, it does, and law enforcement is educated on disability more than folks know. South Carolina has a program called Autism Informed Response and many officers have recieved that training. But we do have to look at both sides. Additionally if someone in any profession is unprofessional, then voice that to those who supervise them and ensure you offer them information on ASD as well. I always suggest writing a letter to the Police Chief or Sheriff and asking for an appointment to discuss the incident and cc their boss. In that appointment express your concerns and ask what can be done to ensure it does not happen again.
Registering your child with your local jurisdiction and that will show others we are making an effort to ensure folks know our children. The more we do, the more it shows we realize things may be misunderstood and we are preparing for those incidents.
I also would think would I want someone to call the police if my child were being abducted or there was abuse taking place. What if our children cannot speak and tell police that we are their parent or they are with a care provider?
Another reason to be prepared. Do folks have a state ID for your child? In this instance does this police department have a registry to look up the child's name and see if indeed the family took the time to do so in case there was a need for them to assist the family? That address they responded to then would have a flag to tell officers an individual with ASD resides at the address.
We can point fingers and blame officers, and yes if they were unprofessional there should be concern voiced. But they responded to a possible abduction or neglect call and we don't know what the 911 call was, nor do we know what the officers were told by their dispatcher. Additionally have folks kept their children in a trunk, yes they have and done many worse things. Yes parents of children with ASD.
It's imperative to know these things, to know also that most departments now have cameras, recording devices for conversations, and that 911 calls can be shared as well as those dispatch tapes. Recreating what transpired would be a good teaching tool and that is what we do and look as well at the mindsets of all involved. It would also relieve the stress individuals like Maurine and her grandson were placed under. We also want them to know if they need the police for assistance, that can happen.
Thank you also to Maurine for sharing this story. It shows we too as care providers can do more to be ready and preparedness on our part is something that we can do more of. Though I don't know what Maurine has done, I would suggest everyone to think about this incident and what you would do if it occured to you.
There are some free resources on our website, fact sheets for law enforcement, 911 data entry registry sheet samples, pocket cards, etc. www.leanonus.org and a note on how to be prepared on our Facebook page which can be accessed from the website.
Again I want to express it's difficult to know what transpires and we can work collaboratively after these situations to ensure they don't happen again in the same manner in which this one did. Unfortunately nothing will ever be 100% perfect, but with 50/50 partnerships with first responders, it does get much better. We've seen it happen and we can all be part of that change.
Posted by: Andrew | June 20, 2012 at 01:42 PM
Like everyone, police officers all have different personalities. My guess is the experience would have been somewhat more palletable had you by chance been visited by some other officer. Some could be autism parents themselves. Beyond that, if they don't even teach doctors anything about autism, what chance is there they'd teach the cops?
Posted by: Carter's Daddy | June 20, 2012 at 12:43 PM
When you consider the fact that most of our moderate to low functioning kids will likely never marry or reproduce you have to wonder whether this is part of the grand scheme to reduce global population and eliminate the genetically "unfit". There are many who believe the world is overpopulated and they are planning 50-100 years down the line. Had those who want to control population simply killed our kids off it would be too obvious whereas autism is mysterious. Survival for humans demands that we be able to compete therefore social ability is crucial. In addition to autism, I will wager that teens who got the Gardisil shot will have fertility problems in the future. I think there is truth to what Alex Jones says but unfortunately he has been portrayed as a crackpot. For example, I think vaccines are being used as bioweapons. Seems to follow a pattern anyone who questions or exposes the truth is quickly labeled a comspiracy theorist and relegated to the fringe.
Posted by: Sarah | June 20, 2012 at 11:58 AM
That is a ploy!
When they have been rude and abusive of their power; they rush in and say that it was you that was rude.
It is called saving their butts
And I have been there.
Supervisors - going right to the top and making sure you do with your complaint - or these public servents will continue to be anything ---but----
Posted by: Benedetta | June 20, 2012 at 08:06 AM
I agree with Bob.
We need to raise the awareness of law enforcement/first responders to the unique behaviors that people with autism exhibit. It is critical.
This was scary as hell. The good thing is that Maurine was able to relay what was going on to the officer because she is such a sincere person.
Posted by: Louis Conte | June 20, 2012 at 12:47 AM
My 11 y/o with ASD is terrified of flushing toilets in public bathrooms. It was be really a mess with a lot of screaming when we can't find a private family bathroom. I carry the http://www.tacanow.org/store/My-Child-Has-Autism-Cards-100/ cards from TACA-NOW incase something misinturprets. Usually during a meltdown, I'm not at my best for level-headed thinking.
Posted by: Heather | June 20, 2012 at 12:09 AM
Good points, Taximom, and Antoinette, I did recently see that teen pregnancy rates were down this year for the first time ever. It could be a trend.
Posted by: Jen | June 19, 2012 at 10:34 PM
I did not begrudge the woman for calling the police nor the police for following up on the call. The details of them interviewing me was very shortened. The police were rude to me and in the beginning unwilling to listen to my side of the event. When my friend called the police dept.she was told I was rude and uncooperative----(not true) as i was just frustrated from not being able to speak.
Posted by: Maurine Meleck | June 19, 2012 at 08:48 PM
I know this isn't exactly on topic, but I need to share and just put it out there:
Had a family reunion this past weekend. Someone was a HUGE Alex Jones follower(he's a radio host/conspiracy theorist). Well, this person started talking about how Alex Jones believes that the government is creating diseases and situations that will lessen our population in the future. He was VERY detailed about how the government is doing all of this, but never mentioned autism.
When I mentioned how I believed that a few years down the line most of our men and some women will be "disabled" due to autism and not able to protect our country via military, police, fire, etc...much less procreate, they were stunned. We suddenly stood there with a massive connection on two very different levels. It was extremely frightening to say the least.
Posted by: antoinette f. | June 19, 2012 at 08:32 PM
I just want to suggest that it might be better to say, "this child has brain damage," and then add, later, "from a vaccine reaction" rather than "this child is vaccine-injured."
The average citizen does NOT understand what "vaccine-injured" means.
If your child had brain damage from being hit by a car, you wouldn't say, "this child is car-injured." If you did, you'd sure get some funny looks. No, you'd say, "this child has brain damage from a car accident."
I know you want to avoid the word "autism," and you want to use the moment as a teaching point ("this was caused by vaccines!"), but it's important to get the priorities straight at such a difficult time.
The first priority is to convince the nice police officer that you not a child abuser and not a nut case.
The fastest way to do that is to say, "this child has severe autism."
Once you've established that you have not abused the child in any way, THEN you might be able to make a stronger teaching moment by saying, "hey, if you know anyone with a baby, tell them my child got this way because he had a reaction to vaccines that left him with BRAIN DAMAGE, and we just found out that it's a lot more common than people know. There have been 2000 cases of vaccine-caused BRAIN DAMAGE already compensated by the US government, and they're keeping it hushed and gag-ordered, so please spread the word."
The average citizen is pretty well immersed in the "vaccines don't cause autism" propaganda--and you can't blame them! They've been steeped in it since birth! But "vaccines cause brain damage" is something they HAVEN'T been brainwashed against--and it just happens to be even more true.
Posted by: Taximom | June 19, 2012 at 07:44 PM
Funny police story. For years (after we finished the Lovass curriculum) we've had tutor/companions work with my son on academic stuff, games, social conversation, etc.
Well, Rory was around 10 or so, and decided that he didn't want to work with the tutor. He called 911, saying "I don't want to do it. Don't make me do it. Please don't make me do it." I think that at his special education school he had been taught about how to call for help.
Double quick time -- police are at our door -- asking "What are you making your son do that he doesn't want to do?" Scary. Rory shows up at the door "they're making me do it -- I don't WANT to do my homework."
We explained the autism, showed the police Rory's workbooks open on the table, and everyone had a good laugh. But not all poice stories are so innocuous.
Posted by: Aimee Doyle | June 19, 2012 at 07:12 PM
The worse I have heard (although I too have found myself talkng to a social worker) is a child brought into an ER by hysterical parents after a vaccine and the Daddy is being arrested for shaken baby syndrome.
The mother screaming and crying
and the ped finally saying in a low voice it could have been the vaccine.
I guess it could have been worse and the ped did not say - it could be the vaccine.
What hurts our feelings or at least mine the most is - well darn - I am a great parent - and I was being compared too -- no worse than that for the neighbor down the street never ended up in front of a social worker. She had been married 5 times, left her kids alone while she spent every nigh with her boyfriend, I had to run off a 25 year old Man from their house at midnight, her 10 year old was turning into our third child.
Yet I end up in front of a social worker I was never lazy. I was with my kids all the time and in the neighborhood awake enough to know the 25 year old man was hanging around a young teenager and a 10 year old. gave up my career without resentment (my fault anyway), I learned how to make sure they made eye contact, spent hours and hours playing games to improve communication, reading - stayed in doctor's officies looking for treatments.
It is just we are trying so hard and we are being judged just the opposite of what we are.
Posted by: Benedetta | June 19, 2012 at 06:54 PM
It happened to us in a square in London once. We were trying to stop our son rushing out into the road and someone evidently thought we were trying kidnap him. Anyhow, within not many seconds the square had filled with an amazing number of police - who actually couldn't have been nicer or more understanding as soon as we started to explain ourselves. In a strange way I found it quite a consoling experience. At least someone seemed to understand us.
This was already quite few years ago. I am sure people have had bad experiences of this kind in Britain, but I also suspect in the US there is a much bigger tendency for police to come in hard right away, sometimes leading to unnecessary trauma.
Posted by: John Stone | June 19, 2012 at 06:04 PM
Would it be of any help in these situations to have Medic Alert Bracelet - Cards - etc? First Responders are used to this type of thing, and might give it more validation... (i understand that folks would much appreciate to educate and be treated fairly without a Medic Alert, however it might save some hassling...)
Posted by: Lynn | June 19, 2012 at 05:39 PM
On this occasion the system worked: it was not unreasonable for the woman to contact the police, not unsurprising if dispatch changed a report of a woman unlocking a child to one of her locking him up, and yet the police figured out what the deal was fairly quickly.
There must be many other stories where things have not gone as smoothly.
Posted by: GH | June 19, 2012 at 05:29 PM
OCD's can be related to PANDAS and a weak immune system...
200 parent's summarys here....
Posted by: cmo | June 19, 2012 at 02:42 PM
This is too close to home, Anne. When my son was 8 he had a major OCD love affair with all things related to numbers. Unfortunately, he discovered how cool numbers could be on the telephone. While I was dealing with my 5 year old and her diaper issue (she is autistic as well), Max went to town on the phone and somehow managed to call 911!
I can only imagine what the dispatcher must of heard on the line - all of Max's strange noises, Kathryn's begging me "no butt no butt cream" Barney blaring in the background. Once the diaper change and clean up was concluded, I realized Max had the phone and hung it up.
Not long after, DING DONG! Who could this be? When I answered the door I was confronted by two officers (one with his service revolver at the ready). I thought there must be some terrible crisis in the neighborhood etc. imagine my horror when i realized the crisis was us. I attempted to explain why 911 was called etc. They did a walk through of the house and grounds, questioned me again and again and then tried to question my kids about the call. True Twilight Zone time.
"What did mommy do 'ta ya' buddy? Why are you crying? You're so smart to dial 911. Don't cry. Is it mommy? Mommy why don't you step into the other room, the little guy is scared around you." I kid you not. I won't go into their Q&A attempt with my daughter but needless to say, I was finally able to get the "nicer" officer to understand that both of my children were autistic, one non-verbal the other barely and that it was all a terrible mistake and would be a funny situation if wasn't so dreadfully horrifying. Not that they grasped what autism meant except in an odd, "You mean like retarded?" sort of way.
When they finally left, they made sure to warn Max that calling 911 as a prank is against the law and that Kathryn was too big a girl to still be in diapers. Thanks officers!!! Unfortunately, this incident taught me to fear police intervention.
Posted by: Christine Thompson | June 19, 2012 at 02:10 PM
As the parent of a 24 yo with ASD, I've been through many such experiences. Most people will do the right thing when they understand what they are observing. In the future, instead of starting with, “Okay, let me start from the beginning.....", Maurine may want to start with, "Joshua has autism [or whatever other diagnosis he may have that a stranger would instantly recognize. I even used to use the term "neurodevelopmental disorder", as my son's diagnosis was PDD-NOS and I knew most people would have never heard of that one.)Once you get the person's attention with this most important bit of info, then you can explain to the extent necessary.
Posted by: Vicki Hill | June 19, 2012 at 01:01 PM
What's wrong with this picture? Here is a grandmother out on her own, taking care of both a child with stomach flu AND a child with autism requiring dental surgery - a nightmare in itself - and what is society's reaction when things go a little haywire? Accuse her, attack her, basically put her on trial. This is a national disgrace. Our children are brain-damaged into autism by a public health program which is purported to be for the safety and benefit of all, and yet when the going gets rough, not a soul in sight is there to offer any help. Rather, they line up to criticize and attack. Imagine how differently this could have gone if the person observing Joshua in the trunk had simply asked, "What can I do to help?" Or if the police had simply offered any assistance whatsoever.
Maurine, I am so sorry this happened to you. On my worst autism days, days when I'm functioning on 2 hours of sleep and I'm driving my son around to calm him down while he is attacking me from the backseat and pulling out my hair and slamming his head into mine and I have absolutely no one on earth to help me, I always ALWAYS wish I had someone just like you who would dive in and help. You are one incredible grandmother. Screw anyone who would assume otherwise.
Posted by: Donna L. | June 19, 2012 at 12:52 PM
Alot of these people have only seen one side of any type of autism. They don't get to hear the horror stories that I have in the line of work that I do. Parents who get bit, kicked, beaten. Parents who have to put padlocks on their food, bars on their windows. Parents and siblings who have to stay home because the child with autism can not handle being in a public place without acting out or having disturbing behaviors. And yes, this can and does go on across the board. Sometimes families can become prisoners in their own homes! I have seen it and it saddens me deeply! Siblings who go through terrible things, especially younger ones who don't understand why their sister or brother is doing this to them always gets to me, because I have been in their shoes even though I was the kid on the spectrum. The nd crowd see the upside. THey see the high IQ, the organization skills, the verbal intelligence. THey do not see this otherside because that is not THEIR experience with the disability. And you have to remember, that people on the spectrum, aspies included, have zero theory of mind. THey think their experience with aspergers is everyone's experience, or at the very least it is very similar, and that all families are like theirs. It takes litterally being shown this other side face to face to make them begin to understand the Autism Reality.
Posted by: Theodora | June 19, 2012 at 12:33 PM
@"a bunch of crap" and also to everyone reading this:
If you've got a problem with the neurodiverse bashing autism parents who want to recover their kids, then please write an e-mail to Mitsubishi who (believe it or not) is funding an initiative for the neurodiverse to spread their b.s. on college campuses. E-mail addresses at end of article below.
See how the nd's are bashing us in the comments on the Canary Party website. Mitsubishi's own rules state they don't fund anything that's controversial, but they've broken their own rules to support neurodiversity.
If we don't write to Mitsubishi in large numbers, we have no right to complain about how the ND's are treating autism parents. We have financial leverage - let's use it. Mitsubishi is a consumer goods company.
Post the above link to your facebooks and e-mail to friends to respond.
Posted by: stop neurodiversity propaganda | June 19, 2012 at 11:47 AM
Maurine is such a warm and caring Grandma to Joshua. His "autism", or as she explained to the officers, his vaccine injuries, cause him to exhibit many behaviors so well known to us - OCD and repetitive behaviors - often being traced to latent bacterial/viral infections. Add in a sedative and a medical procedure and their behavior can become so much more exacerbated.
Maurine is always putting Josh's care as her number one priority so it is hard to even read that anyone would suspect her of a negative thing, let alone an act of cruelty. As anyone knows from reading, Dr. Wakefield's new book, "Waging War On The Autistic Child", there are people out there who can slant any of us into a "bad" caregiver. This is a wake up call to us all.
Also want to quote from Prof Luc Montagnier,http://montagnier.org/To-autistic-children
"A terrible disease that affects more and more the behavior of young children, autism is declared irreversible, and it would be a sacrilege to try to cure them. But I say yes, let us try to cure these children, and as fast as possible!"
Posted by: Teresa Conrick | June 19, 2012 at 10:14 AM
Maureen Melnick is a super grandmother as many of us know, and I'm so sorry she found herself in this situation.
This story also highlights a flaw in the car's design. It shouldn't be so easy for a child to get into the trunk of a car. But it's easier to blame the parent than to blame Detroit.
Posted by: first do no harm | June 19, 2012 at 09:24 AM
OT but not really IMO. As long as these pro Neurodiverse moms are out there bashing every other mom and dad who actually would like to see their autistic kids recover the awareness conveyed to the public will be confusing. She wrote another post making it clear she did not do biomed and listened to the science (aka being sucked in by Paul Profit).
Her facebook commenters are the nastiest bunch of autism moms. Please comment on Huff. Post once this ridiculous post is up.
Posted by: a bunch of crap | June 19, 2012 at 08:59 AM
If nothing else .. this incident proves .. once again .. how critical it is for "first responders" .. police, fire or otherwise .. receive mandatory training making them fully aware of autism .. and .. how best to handle incidents involving the autism community.
From all accounts .. the numbers of autistic children about to mature out of our public schools will rise dramatically over the coming decade .. which means .. the potential for serious misunderstandings with severe consequences involving first responders will increase accordingly.
Posted by: Bob Moffitt | June 19, 2012 at 06:26 AM