Living, Dealing And Understanding Autism.

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Reading Time: 11 minutes(Last Updated On: January 29, 2018)

Autism Spectrum Disorder (A.S.D.) is something that is affecting our society in a lot of ways, yet not enough in my opinion is being done with this fact to educate, accommodate and accept those affected. From the ones who are diagnosed with the condition, their parents/carers, family and friends, the community and beyond. Most people would have some awareness by now of Autism, but how much of it is genuine and helpful? I still find that so many are quite ignorant and judgmental towards it. This is something I wish to change for the better.

My personal experience.

I have a lot of personal experience with regards to things like Autism and its often related conditions of anxiety and sensory processing issues. I am an Aspie (it’s short of way saying Aspergers) which is on the lower end of the wide range of skills/challenges on the worried-girl-413690_640Autism Spectrum. I wasn’t diagnosed until an adult in my mid-twenties after convincing the doctor to get me assessed by a psychiatrist so I would get a clearer understanding of that which I had already realized myself by my research. I have since continued with much more research, trial, and error and have learned a lot about myself and others.

I wasn’t aware much about Autism at all until I was an adult and my youngest sister was diagnosed with severe Autism. Her symptoms were more noticeable as she is mainly nonverbal and attends a particular school and will rely on my mother to be her carer for the rest of her life. However, once I sought to understand more what this Autism thing was I found that the signs were there for others around me who also were later to be found as being recognized on the spectrum too. I discovered that my own son’s behaviors and challenges were explained by this diagnosis too. He has quite severe autism but is quite intellectually intelligent and is excellent at communicating most of the time with the standard ways that society expects us to talk, but in a meltdown, it can get quite complicated, and we need to use more creative ways to communicate and soothe him).

Gaining more knowledge and experience of Autism

I have read a lot, watched videos, attended workshops and groups, sought out and found ways to access some formal therapies(speech, occupational therapy, psychology, etc.,). I ‘ve been to doctors and specialists(pediatrician, psychiatrists, emergency services, etc.,) various school systems and communicating with their staff supports informally and more formally at meetings.  All to be able to help my son better to meet the challenges he faces living in a neuro-typical world a lot easier. All children should have the supports available to them more easily so they can thrive living out their positive potential more.

Lack of supportive services

homeless-844215_640Unfortunately, I have found that the system supports that are in place to help those who are struggling are not adequate. And for those who are also struggling to pay the bills already getting access to private therapy help is a dream. There is not enough funding available to those who are diagnosed later on in their childhood the older one gets, the less Autism support funding it is available. So we were quite limited in what we could get. I got myself into a bit of debt trying to pay for private health insurance and some individual therapies for my son before I had to stop or risk being evicted out of my rental property and the utilities disconnected. I also traveled by public transport long distances to get to such places. This shouldn’t have to be so. The public system couldn’t provide much support to us long wait lists, often not splendid services either(staff and resources). I have gone times with the lack of sleep, rest, food, encouragement, being able to do basic self-care. I was just trying to survive, make sure my child was happy and safe even though I looked like a wreck. This is not ideal and isn’t able to keep up. Try getting a sensory sensitive child to places that require going through a lot of travel, stress and time and it is not easy. I knew I couldn’t keep it up. That it was actually up to the parents, not the therapists to do the bulk of the work anyway.

Learn how to support your child better

So I decided to put more effort into learning what I could from those sessions as even the professionals would say the parents are the ones who during the intersession period would be having to do most of the at home support assisting the child to learn and cope better. So really, as great as it is to get special help from people with pieces of paper to show their qualifications you actually can be quite qualified yourself to help your child. Put the effort in to learn and you will see some positive results.

ball-605592_640My son knows how much I tried to help him(I did my visual charts, found objects that could be used for sensory seeking and calming to have at home, and out). I spent time listening to him and trying to help him learn better life skills) and that to this very day(even with all the changes in life) knows I will always be there to encourage, listen and try to understand him. This is what everybody needs, but especially those who often get judged, misunderstood, overwhelmed and isolated which sadly happens a lot for those on the spectrum and those closest to them.

Don’t forget yourself

I know what it is like to have so much of your energy focused on preventing meltdowns, trying to educate your child about life in ways they can understand, and dealing with the outside world’s negativity all while trying to live your day to day life yourself. It is important to recognize just how much you are giving out and try to get supportive influences around you more and things in place to make life easier on yourself how you can so you can continue being there for others. I didn’t always do too well at that-I have experienced a lot of absolute exhaustion, with my life falling apart as a result. I found it difficult to keep up with own health and well-being and became unable to share a more day to day role with my ex-partner in caring for my son who was having quite high care support needs as a lot of places were not able to support us(ever been on a referral circle?-one The site can’t help, refer to the next and around it goes to where you find there isn’t that much out there when you don’t fit in the exact definitions they have in place).

Difficult choices-adjusting

meltdown-1312488_640I decided it was best that I needed to focus more on my life instead of dealing with the extremes of caring for someone(he is a tween now and so is quite strong). He often showed violence and aggressive behavior from being constantly misunderstood by people and the world around him being too much to express his emotions more effectively he would rage a lot. His dad is his sole carer now with me around now and then to keep in contact. It is something that I had to do(step back from assisting with the caring role), but not something that was easy even with the amount of negativity I was getting. I would like others not to have to go through the level of struggles and heartaches that we have. I have learned a lot and have adjusted to my new phase of life as someone who still can be there emotionally for my child even from a distance, but now has more time to improve my life, as well as expressing my knowledge and wisdom to more people such as in ways like writing. I also see this as a way to help the world be a more accepting place for my son and others of course who are affected by Autism. I feel quite strongly about vocalizing the rights of those who are less able to do so themselves.

What causes an outburst/meltdown?

Just living an everyday life many of us know how stressful it can be if we don’t  take the time to relax and refresh ourselves. For the person who deals with things like extra sensitivities, anxieties, sensory issues things that stress them can build up a lot more quickly and sooner than you might expect. This applies in particular if ways to cope with such triggers haven’t been adequately learned yet. This is why self-awareness is so important (and helping those who are younger either physically or mentally to do so) to be practiced. From there you can then identify what may be particularly difficult and find ways to either avoid it if practical and helpful or if not then ways to cope with it better. Sometimes though we can’t control the environment around us enough, or we overestimate just how much left we can tolerate before it gets too much. At these times life can get quite overwhelming and if not recognized early enough and things put into place to regain calm and control it can get to what others may see as an outburst(which shows in different ways for different people). Sometimes this can be just avoided by letting the one affected do their self-soothing method(shielding eyes from bright lights, plugging ears from sounds, going somewhere quieter, fidget/chew toys, having a favorite comfort toy, body movements like flapping hands or spinning, etc.,). Sometimes one needs reminders on how to self-soothe and a child for sure is still learning so be patient.

It doesn’t help

The problems usually are when those around the one having the meltdown are not supporting adequately(either intentionally or not). It doesn’t matter how odd one’s ways to calm and find balance again are seen as(along as its safe)-it should be respected not ridiculed. Often a meltdown occurs when in public and there is so many others happen to be there watching either outwardly judging or silently. It doesn’t help to be accusing a child having a meltdown of just being manipulative (meltdowns are not as they are just too overwhelmed and not thinking very clearly). It also is not helpful passing negative comments about a parent/carer who is trying their best to soothe their child’s problems. If you can find a way to help then practically do so, but if not leave it.

Support parent and child

problem-860227_640A child who is experiencing a meltdown needs to feel that there is a sense of security somewhere to turn to amidst their overwhelming feelings. They have had too much to process at once for themselves and need the support of those around them to get them through this challenging time. If they get the positive feelings of safety from their caregiver, then it will be much easier to learn from the experience and try again in the world to improve their skills. However, if they receive negative responses and experiences about places then that just reinforces to them that some things aren’t safe for them to do(like going to the shops/crowds/travel etc.,).  This then causes more avoidance of stuff that is useful to learn in life, and also when they do experience it are more likely to have further outbursts as they haven’t really learnt how to manage in a safe supportive way.
It can take a lot of work to be regularly checking into seeing where your child is at about how well they are coping with the situation around them. To get to the point of bringing the child into situations that may not be easy for the child to deal with yet, are quite a bit of work for a special needs parent. However, it’s one that is often necessary to get tasks done and also to give the child an opportunity to grow. Be supportive or just walk away if a meltdown or autistic behavior is bothering you. Everyone deserves the right to go places and be with others and experience life even if it is not easy to do at first. It’s difficult enough to deal with the demands of daily life day after day. People who give so much of themselves to help others even when they have to make a lot of sacrifices of their life to do so deserve our aid and support not to be isolated and labeled them as misfits.

From a child’s perspective

Sometimes a once verbal child may become quite nonverbal when stressed. I decided to write a little bit from what they would want you to understand but can’t verbalize so you may be able to help better someone you know or just if you see a situation that it applies to you are more aware.

Please try to be understanding my world can get too overwhelming for me at times. Sometimes I may do things that seem odd to you or not be able to use my words out loud. I still need my opinions heard, and my needs met, though. Some of the ways I may try to communicate is by pointing to objects/pictures, writing/drawing, and also spelling out words with either hand gestures or finding individual letters to point to so to form those words. As you can tell, I’m quite creative and smart to find these ways also to communicate. You may want to keep pen and paper handy for either me to write with or for you to take note of the letters I point to so those words can be understood easier. I may also find it simpler to type on a mechanical device’s notepad. I know you may not be used to this way and it can take more work and may get frustrating at times please be patient. That will help the communication in whatever way I find easiest to do at the time to do to keep flowing and be more efficient in getting whatever message across to you that I have to share! Thank you.

sad-505857_640When I’m particularly stressed with life, it is a lot more of a struggle to understand complicated things. Keep it simple. One question and activity at a time, wait for my response and don’t judge me for my feelings. I’ve put my trust in you that it is okay to talk about such. It can take a lot of effort to look at my real feelings. I need to feel safe to express those feelings and that I am being heard. Otherwise, I may just shut down more, and those behaviors you may think of like a tantrum outburst(but are a meltdown of where I am too overwhelmed to think clearly) are a lot more likely to occur with more severity to the outsiders but also more severity to me too. I know you don’t want that and neither do I.

What I need most at those times when I’m feeling out of control is to find ways and people who make it easier to find my calm, happy, helpful self again.  I know you can do it as that is why you are reading this. You are my voice when I have lost mine, my safe place to look to when it gets too scary, someone I can learn by example by on how to be strong and brave like you to stay calm and confident even when it is not easy to do so. Remember that even though there will be things that challenge me and at times it gets too much, others might not understand you and even judge you unfairly that I your child am watching, learning and trusting in whatever you do or say. Don’t worry about them keep your focus on helping me be more happy, safe and healthy. I learn from your example and so can they if they choose.

More awareness and acceptance

symbol-of-infinity-of-autism-1192408_640I hope that writing from a child’s perspective also helped you the reader see things from a different perspective of where you can relate to the person who is affected with Autism and also their parent in a more compassionate way. To me, even with all the challenges it can bring having Autism yourself, caring for those who do, or just having such affect your life in some other way it is certainly quite a gift. A gift that often gets disregarded as such just because it might not be what you expect. I think that through such I have learned a lot, and it has helped my personal development and to know what matters in life. Lessons like to take the time to understand one another more, really to notice more of the smaller wonders we often overlook (like the way my son saw with wonder the pattern of raindrops on a car window that we were walking past). To see the skills that people have and to encourage that (my son is great at technology and assembling things), to see the ways that people show their positive qualities more(my son is very kind to animals.
If you need help with something that he can do he will often eagerly want to help), the amount of focus on tasks (of interest of course!) can also help us remember to find what we are good at. To love doing and then do that to not be so restrained by society’s ways of having to live our lives by a certain fixed way of being.

We are all different just some of us human beings are a bit more so than the rest. The world needs to be more accepting in general, but for those who experience extra sensitivity to how things are let’s learn ways to make such valuable people more welcome. It will be beneficial for those with Autism, but also to yourself when you learn to see what gifted, loyal, caring people they are!

by Tabitha Culph

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