Expert: Melanie R Jones, PT MTC - 1/1/2012

Question
QUESTION: Hi Melanie.. I have written before regarding my son who is now three and have recieved some fantastic advice and wonder if you could help regarding his very challenging behaviour.
He has had various assessments for autism and a diagnosis of autism is looking very likely now and we have to go back to the child dev centre in January for diagnosis. His teacher at the specialist centre for autism which he attends has said she also believes he has sensory proccessing disorder and states that he has no sense of danger and requires constant supervision.
The main difficulty we are having at the moment is his challenging behaviour. He has what I believe to be meltdowns very frequently during the day where he will completely loose control, these often appear to have no obvious cause, other times it could be that for example whilst playing his train comes off the track or he drops something,when he is told no,when he can't achieve something immediatly,has to wait or express what he wants,if he wants you to do something and you don't compley,if another child touches his toy, The list goes on, but he'll react by throwing himself backwards, banging his head hard on the floor, screaming,throwing things,biting objects,himself or me if I try to restrain him,kicking,hair pulling himself or others and head banging. He will rage for over 20 minutes.The only thing that seems to calm him down is if I put him in his pram with a blanket and dummy where he calms down ,although this is only going to be a short term solution.
I cannot talk or reason with him and often never know what caused it in the first place and it happens so fast that there is no way of predicting it. He has plenty of one to one time. What concerns me is that these episodes are happening more frequently and he is becoming more aggresive. I wrorry for his safety and other members of the family as during these times he will head bang everything,throw everything in his path, he has even grabbed and thrown hot drinks,wripped off wallpaper,thrown furniture,its like he becomes completely wild.
Without the pram I have to restrain him and I have been kicked,head butted, had my hair pulled,bitten and slapped.
I have tried to ignore the behaviour but he just continues and won't be distracted.
I do not know what to do. He cannot play alone for more than 15 minutes without going into a rage. When his play is supervised and structured he has less rages and will also play longer when engrosed in repetitive play.When his support worker comes to the house to work with him he is great and the minute his session is over and he has to play alone he gets aggitated and often has a meltdown.
Do his outbursts sound like meltdowns and how do I deal with them.Can you please advise as they are really getting me down. Many thanks Sandra

ANSWER: Please pardon my delay in answering and the brief reply.  I jammed a finger and cannot easily type ATM.  Perhaps your support worker can offer some suggestions meanwhile, and you could concentrate upon keeping his activities structured and more closely supervised, since it seems that is what he is needing.  I will try to write more once my finger returns to normal size.  Once again, please forgive the delay.

---------- FOLLOW-UP ----------

QUESTION: Sorry to hear about your finger and hope you recover quickly. I look forwould to your response to my question. Sandra

ANSWER: Dear Sandra
   You bring up a lot here.  Many would categorize the majority as standard child rearing questions, although as you know the tantrums of an autistic child will be more intense and potentially more confusing to the parent than tantrums of a "normal child".  There are a number of reasons for this.

   Here comes what will seem to be a "soapbox".  What I'm trying to describe is something most neurotypical individuals DO NOT understand.  It is in stereotype by necessity.  PLEASE do not assume I am saying anything specific about you or this situation.  I feel the perspective is an important one to understand by anyone serious about relating to autistics, but it is only a part of the whole.  With that in mind, I will describe a little of what it is like to grow up autistic in a neurotypical culture:

   Autistics generally tend to feel everything profoundly differently than NTs (neurotypicals).  We tend to either be told we are too intense about everything or that we are emotionally dysfunctional.  The fact is that most of us have sensory processing disorders which cause everything we see, feel, touch, hear, taste, smell, etc., an experience unlike that of NT's.  We don't have the same framework for social interpretation others have at birth.  Neither do we generally have access to the same inborn mechanisms of inhibition (for social adaptability, emotional shielding and risk assessment/avoidance) those without autism have.  These and other reasons are the basis that NT "experts" claim autistics do not empathize with others or cannot forgive or judge others "normally".

   In addition, NTs generally tend to feel everything profoundly differently than autistics.  Does that sound like a repeat of the previous paragraph?  Almost everything and everyone in the autistic's environment is hostile and condemning to him or her.  This is DRAMATICALLY more so than most NT individuals would expect or believe.  I have grown to believe that it is unintentional, but it is nonetheless sharply felt by most of us. We learn at a very early age that nothing we do is right.  We cannot please our parents and others don't approve of us.  We are left alone in a crowd (except for the restraining hand of a supervisor) and are rarely chosen for teams or friendships.  People ridicule us for reasons unknown to us.  Our interests and insights are generally unshared and unappreciated.  We are told to behave in ways that seem to us arbitrary and illogical.  We are expected to submit to things that may be uncomfortable or even painful and are often punished if we resist.  Some withdraw, some react in ways designed to regain control over part of our lives, some become frustrated and depressed.

   We are told to learn to understand and behave like "normal" people, but we don't see others try to understand or behave like we do.  We are told we are oversensitive and deficient, socially inept and even insane, we are ignored or mocked and even shunned, and then are exhorted to learn to be "friendly" like they are.  To an autistic, "normal" often appears deceitful, hostile, inconsistent and superficial.  We live under a double standard, where we are punished for things that are overlooked or even approved of when others do what seems to us to be the same thing.

   |  "When his support worker comes to the house to work with him he is great and the minute his session is over and he has to play alone he gets agitated and often has a meltdown."  

   There could be a number of factors contributing to the meltdown here.  It may be difficult for him to switch from one activity to another quickly, especially from a highly structured "work session" to an unsupervised "play time", and especially since he does not have control over the transition.  Time is not experienced in the same way for autistics, and he may be unable to cope with such a dramatic change (though it may not seem dramatic to others, it probably is to him).  The harder he concentrates and works with the support worker, the more difficult it will be for him to make the transition successfully.  Try to give him consistent signals that the work session is coming to an end, then as it arrives, allow him to participate in the transition in a HIGHLY predictable and unthreatening way.  Do it the same way each time.  And follow it up with something slightly less structured but relaxing and enjoyable for him.  

   Sometime when you are doing well together and he is relaxed and happy (yes, I know this can change quickly) let him know that you need to learn how to help him avoid becoming overwhelmed and sad (his outbursts).  Suggest that you develop a way to communicate with you so that his frustration doesn't get too much for him.  Perhaps a picture on a wall with various needs that he can point to, or a signal with a prearranged response could help.  Although he needs to know that you are the one making the rules, he also needs to know that you want his perspective.


   There are some good child-rearing books which can help, such as "The Strong Willed Child"  and "Love Must Be Tough" by James Dobson among many others.   You may wish to research some behavioral management techniques such as are taught to those following Traumatic Brain Injury or strokes, etc during their post traumatic rehabilitation.  The components of "de-escalation" and "diffusing" an outburst which are used in these situations could be helpful for anyone with a child your son's age.

   There is no way I can adequately cover all of the things needed to get you through this very difficult season of your life.  You don't need to limit yourself to autistic references only as long as you are mindful that your child is growing up an "alien" in a "hostile land", so to speak and adapt the instructions appropriately.

   Please don't feel alone.  You ARE NOT.  The reason it seems that you are is because this aspect of your parenting is so time consuming and emotionally draining.  Don't be afraid to ask other responsible people for help sometimes so you can recharge.

   I feel for your situation.  I hope this helps at least some.  You have my best wishes.




---------- FOLLOW-UP ----------

QUESTION: Melanie, thankyou again for your most helpful advice. It isn't easy to understand what my son goes through, how much his behaviours are due to autism or just poor behaviour or even if it is my handling of him. The only thing I do know is that we are having major dificulties managing his outbursts.
Christmas brought home to me just how difficult it must be for him also. We went on a shopping trip and a visit to see santa. I had pre booked the tickets as I knew how difficult it would be for him to wait in a line, however we were given a time slot and had to wait 5 minutes, he began to rage within seconds and my husband had to walk around the mall with him whilst I waited with my other children. I watched him and he was walking on tiptoes the whole time and flapping his hands. when we saw santa he did not acknowledge him at all, just played with a toy train, he would not open his present. After he raged in every shop and my husband had to keep taking him out. My son looked very distressed, everyone was looking at him, one even comented on his poor behaviour.
Later that day we went for a family meal and within minutes the screaming started, we tried to distract him with toys and food which he threw.Another complaint from another table and looks of disaproval from others. In the end I suggested we get his stroller and put him in a quiet corner facing the wall and there he stayed as we ate our meal. It felt cruel but it was obviously what he needed.He instantly went quiet.
On christmas day he would not open any presents and when my daughter opened one for him he just seemed stuck on that gift and when we tried to encourage him to open another one he got very upset.
Later family arived. I looked at his face and he looked completely overwhelmed and distressed, he would not open the present and seemed to just wonder around aimlessly. He was so agitated.
I am certain he is showing signs of sensory proccessing difficulties, but what should I do. Do I exclude him from these situations or should I just be supporting him through them. I am a mother of four and feel so overwhelmed, I do not know how to manage him. I have lost my confidence as a mother.I want him to be happy. I want to do whats right for him. Could you offer any insight into this. Many thanks. Sandra

Answer
Hi  Sandra,

First and foremost, though it is understandable and quite normal to feel the way you do, DO NOT let it rob you of the joy of motherhood.  From what you've written here you likely are a very good mother.

Read what you've said.  The first thing that jumped out at me, so to speak, is exactly what you mentioned here:
 |  "I am certain he is showing signs of sensory processing difficulties, but what should I do? Do I exclude him from these situations or should I just be supporting him through them? I am a mother of four and feel so overwhelmed , I do not know how to manage him. I have lost my confidence as a mother. I want him to be happy. I want to do what's right for him. Could you offer any insight into this?"

 |  "I looked at his face and he looked completely overwhelmed" and distressed, he would not open the present and seemed to just wonder around aimlessly. He was so agitated."

I think you are right.  He is overwhelmed, as are you.  Depending upon which sensory processing difficulties he may have, it may take very little to overwhelm him so that he has to rage or shut down in order to cope.  My family knows when I say I'm "auditory-overwhelmed" that I cannot process much of anything they may need to discuss until I have recovered.  Depending on the day's activities, it may take a lot or very little to shut me down.  I have a hard time concentrating on auditory input unless I can attach a visual image to the sounds.  I can do that by knitting/crocheting, etc or video game/puzzles, but not if the visual stimulation is chaotic or confusing.  For an autistic with a hypersensitivity to some sensations, becoming overwhelmed can be a major challenge.

Now think through the Christmas day.  It sounds to me as though it would have been extremely overstimulating even to a non-autistic person.  Malls are classically chaotic and overwhelming, and are known to send many autistic children "over the edge".  Visiting relatives, meals with unusual procedures and sights, and atypical sounds are often challenging as well.

My gut feeling is to think of a way to let your other three children enjoy as normal a social life as possible, while allowing your son to back off and recoup periodically.  If you can let him show you what he can and cannot do without allowing him to manipulate you or his siblings, you will likely find he copes more effectively.

It IS hard to know what is the autism, what is child rearing error, and what is mere selfish immature and sinful behavior.  That's why YOU are one who needs to become a firm but loving support for him as one who knows him the best. Don't let "experts" condemn you or your son unreasonably (they likely will) so that you lose the energy you need for your family.

Please remember I am just another autistic (mother, child, patient) so even though I can really relate to much of what you say, I can't always have the answers you may need, especially since it sounds as though you need support and rest the most.  Finding a good supportive friend is a challenge I have not done well, although my children are extremely supportive and loving now, they are much older than yours, and to depend upon them exclusively for my support is unfair to them.  Nonetheless, you need non-condemning friends who can "spell" you periodically if possible to give you time to yourself, and to spend with your son individually while giving your other children the outside socialization and fun they also need.  I hope you are able to find such a support system.  A living Biblical church may help, although autism is one thing many Christians don't understand any better than secular groups.  Jesus does care and provides an example, but Christians are not yet perfect, though they are forgiven.

Don't give up.  IF you fail, try to recoup and get back up again without coming down too hard upon yourself or your family

I hope this helps.
Melanie