Autism Awareness Butterfly
As you might know as part of our ongoing autism awareness campaign we run a Facebook Page called AutismTalk
. The aim of the page is , in part, to provide people in the ASD community with a forum to share stories and ideas.
A few days ago one of our members asked a fascinating question. “Hi I’m doing a speech on autism I was just wondering if by chance u can enlighten me on the effect of autism to patients and the struggle the parents may face raising children with autism”. With over forty responses we felt it would be valuable to with our readers as aprt of our Autism and Challenging Behaviour series of blog posts.
Please feel free to use the comments section below to give any advice you have have about the challenges others face and also do share what you feel to be your big issues with regard to autism.
Maria mention one of the major concerns which I do share “One thing that affects a parent is the world around my boy not understanding him what if I died what would happen to him who would understand him like I do.”
On the other hand Elena commented “The struggle we face with my 6 year old boy even though he’s verbal and on high end of spectrum is dealing with the behavior prob , it impacts the whole family and adds additional stress to siblings. The other stress is them doing homework when challenges at school already exist. Not wanting to go to school and running towards traffic. All we can do as parents is pull all resources available do the best we can to see our kids succeed as adults and being independent but at times depending on situation makes it difficult to feel we are doing things right.”
“I think my biggest struggle of autism is not being able to understand my son because he has a severe speech delay. Also his over sensory when we are out and the world becomes over stimulating and it’s to much for him and he doesn’t listen at at. Dealing with that on a daily basis wares thin on patience quick.” was Roxy’s thinking.
Jessica shared “My biggest struggle with raising my beautiful daughter who has autism odd pica (eats non food items) anxiety and possible dyslexia is not being able to take away her sadness when she crys and says mummy why me dosnt god love me why me I tell her that God spent a little more time making her because she has added extras it brakes my heart not being able to do any more then hold her tell her it will be ok when deep down I don’t know if it’s going to be ok…could also be when trying to explain to other people why my daughter has melt downs that are sometimes out of my control and I.can’t stop feel free to inbox me I have so much to say”
“My daughter is 18. It has been hardest watching her struggle with social skills and anxiety. It makes our family feel alone to see everyone else’s kids growing up with friends and cousins and her alone. But she has amazing gifts and is taking college classes. Our family will move to Florida from new England so she can pursue her dream of working for Disney. Just because she has autism doesn’t mean she can’t have a good life. I’d sacrifice a lot to make that happen.” said Lisa.
Juliet’s view was shared by a lot of our other readers “The biggest challenge for me is trying to keep my cool with people who don’t understand my boys. My youngest is diagnosed autistic, my middle one has sensory integration issues and exhibits symptoms of ADHD and PDA, and my eldest has had serious struggles with social interaction and learning not to take everything literally. Only my youngest suffered serious speech delay, and he is the only one with a diagnosis. They are all very bright and do well when they’re interested. However, their progress at school is directly related to the quality of the teacher, and it is so frustrating. Each year, with each child, we have had to wait to discover whether the teachers will love them and get a kick out of getting the best out of them, or write them off as difficult and badly behaved, and complain at year-end about their lack of progress. My boys are my boys – smart, funny, affectionate, sweet-natured and transparent – but their brains are oddly disconnected from their sense of themselves: they won’t notice that they’re hungry or thirsty, or need sleep or the toilet, or are annoying someone else, or humming or tapping or twitching or fidgeting or repeating the same sentence over and over… But because they are bright and often very sensitive to outside stimulus, people cannot seem to believe that they can be so unaware of themselves, especially as they tend to be very self-conscious in certain situations – like my youngest loves to sing, and will sing all day, wherever he is, and regardless of whether it is appropriate. But if he notices that people are listening, then he is completely overwhelmed and cannot continue, so he won’t consider joining a choir. People usually love him, given time to get to know him, but I am sick of people judging him initially by their own sad, narrow and twisted standards, of always being the reasonable one who sympathises with their difficulties when I want to slap them for being too lazy to try to understand his (or his brothers’) struggles. Pm me if it would be helpful.”
Zara mentioned routine “My biggest struggle is when something changes in routine, it’s life you can’t control the world. But when something changes or disrupts what my son is doing, my anxiety shoots up as i know hes going to get very anxious or result in a meltdown. You lit see the change coming and you like ow god and look straight to see if he has noticed.
What makes it worse, is others looking & trying to get involved. Yes thank you for wanting to help, but i am lit screaming inside please leave him alone more fuss makes him worse. My son is 5, he has Autism, Global DD & SPD. I am qualified support worker for adults with Autism & LD and Teaching Assistant for children with ASD. If you need to know anything inbox me, as i’ve met alot of families and situations. Good luck! X”
“People expecting me to place my daughter in a residential care facility. It isn’t what she wants or what I want so sometimes I wish people would back off with their opinions” angers Vanessa.
For people like Kerri education is a major concern “A lot of parents do not know that the school system has programs to help in and out of school, even during the summer. They can come to your home and help the entire family. My son is in the spectrum and has been in school since he was 3. We have learned of widgets and weighted vests and blankets to help keep them calm in environments where it is hard to keep their stress levels down. He carried a Woody doll ( from Toy Story) for years. Now he carries a car in his pocket. It’s the little things that can keep them calm. They also have stones with encouragement words on them, but in order for these to work they must have time enough to understand the purpose in making them a reminder to stay calm. Videos and apps are a great way to teach them emotions and social cues. Now my man is in the second grade although he is still in speech and occupational therapy he is an A B student in a mainstream class. They are very capable to learn and cope with situations if the parent is able to stay consistent. As my son has had trouble with being around a big group of people with lots of noise he can now handle being social without it overwhelming him. I wish I could help more parents to deal with this because I have seen what can be done with my own child. You must never let what others think bother you. Because then your child has a hard time coping if his parent or guardian can’t handle it, they think they can’t either. They feed off the feelings of others around them. Staying positive is the best way to make your child understand that these things are normal even though they see situations as fearful and sometimes painful. My son would also look at me when he felt overwhelmed and I would simply give him a thumbs up or tell him simply that it’s ok. By me not making a big deal out of the noise or tons of people around us he eventually learned that this is normal and he can handle it. So pay attention to your child and see the expressions on their faces as most do not have any other way of communicating. Encouragement and keeping yourself calm is key. I have talked with parents and seen the way that others treat my son and I can tell you to never allow them to use this as a crutch in life. We all have autism traits as you think about your “pet peavs” you must learn to cope with them because otherwise they would control your life. No one needs any pity for the way they are in any aspect. Temper tantrums are one way children communicate whether autistic or not. They must be handled in the same manner. I have seen parents with autistic children that simply ignore them when having them. Timeouts and earning stickers for good behavior is a great way to deal with these, even if your in the middle of shopping it is best to stop and take a moment to let your child reflect on the situation and encourage them that it’s ok to feel the way they do, but they must learn to express it in a more calm manner to control their own stress levels. I know I have went on and on, but let me share one strategy that I have found works.
Take tennis balls and the holder. Color the balls. One green, yellow & red. Take privileges you allow them at every level. Red basically being grounded, but still allowing something to occupy their time. When they misbehave take the green ball, which would be all privileges. When on yellow they only have certain privileges they get because of their behavior. So on and so forth. Allow you child to earn the higher privilege levels back. This shows the can be rewarded for good behavior and positive reinforcement is always good. My son cannot stand loosing his green, as over time he has learned to be proud of keeping his privileges. Every week allow them a small reward for staying on green. My son gets a cheap car every week for staying green. This takes consistency from the parent otherwise it cannot work. As far as the child understanding the purpose, don’t give up. They will get it. There are any ways to reward good behavior, this is just one of my favs. I have found that the more positive you are about anything your child does the more positive they are. My son has lots of friends who sometimes allow him slack that they wouldn’t give other peers. I try to let them know that he should be treated the same as everyone else, because I would never want him to learn he is better than anyone else. If he thought that now “life” would be very hard on him once he is older. I love the fact that parents can get help from others and I think we should all learn that autism is special, but our children need to learn they must cope with their difficulties in life so they can be a part of society without feeling so out of place. I want for my son to know he is special because we all are, but I want him to understand his disabilities are not a crutch to get his way. I hope I have helped. Parents of autistic children must stay focused and it is hard work, but if we want our “au-some” kids to be learn we must see that it is done. Sometimes we underestimate what can be taught, even if it takes being very repetitive, they can learn and learn well. Only if we figure out their unique way of thinking.”
Violence is a worry for Valerie ” Violent behaviour towards myself & my other daughter is my biggest struggle and as someone else mentioned, she is getting bigger and stronger and I am less able to stop it. She often won’t listen to reasoning when I try to explain the reasons why I am not allowing her to do some of the things she wants to”
Late diagnosis was Vicky’s big concern: “My biggest struggle was because my daughter wasn’t diagnosed (11) , before her diagnosis I had no idea why she was behaving the way she was , she was diagnosed aged 7-8 with ADHD but still some if her behaviour didn’t make sense to me , just over a yr ago the docs mentioned ASD , when I looked into so much made sense , 10 mths ago she was diagnosed , theirs still a lot I need to understand and learn but just getting the diagnosis had changed do much x”
A similar situation for Louise ” Life can be a struggle and emotionally exhausting to list a few my sons 13 only got diagnosed with autism in May he’s managing to cope better as he’s getting older but still has his moments his speech has improved thanks to speech and language gives eye contact thanks to a p2 teacher and is finally able to socialize a bit better and is actually making friend he’s came on leaps and bounds over this past yr and has a great support teacher in high school we don’t have a really close family my husbands foster mum some times watches our son if needed but that’s it!!! so can be very lonely at times when he would have a melt down at school bite someone or kick and punch they other mothers didn’t understand as he got made to be the bad kid and kids just started to no like him same with some of our friends who have “perfect kids” they think its not normal behavior but in bens world it is!!! thankfully he’s growing up to be a lovely young man can be very loving and helpful but as he’s officially a teenager now I have the huffiness and major over reactions which he finds hard to control himself but life would be very dull with out him all I do is support him the best I can as he’s growing up its a worry though will he get a job and stick to it will he settle down with someone suppose only time will tell x”
Melissa looks at us as parents and says “My biggest challenge as a parent is patience. My son is very smart but sometimes it takes him a while to pick up on simple things. Being patient makes things less stressful for all of us.”
Monique mentions foods “My twin sister, aged 30 (diagnosed at age 5) only eats 7 foods-fried bacon, fried chicken thigh, juiciful oj, ovaltine biscuit, mangoes(3types), oranges and water . note specific names. My parents had to buy her food in bulk first then get grocery for the rest of the fam. Finances were a challenge but we are still managing. Behaviour wise she jumps and make sounds when excited. She used ti throw tantrums when not getting what she wants. She is much calmer now. She speaks a few words. Her non verbal communication is very good. As a fam we have learnt great patience and understanding. She is a blessing to us. Her interests are watching beauty pageants and history documentaries, using the computer, figuring out electronic equipment. She knows all the flags and countries of the world but cant spell cat. She can write them in any order she wants whether alphabetical or by region. She is a mild case. She loves to play in her hair and style it . she smiles and hugs a lot when she is ready.”
For Sara as with many parents communication is a big issue “My son is 14 and is high functioning. My biggest struggle is dealing with how he converses. We understand that he obsesses about certain subjects and struggles to hold a “normal” conversation with others. He gets bullied often because most kids his age have outgrown his interests and think he’s weird. We work on proper conversing techniques, asking about the other person etc. He forgets when he’s excited and won’t stop talking until he’s made his point, even if interrupted. It’s hard to know he’s struggling at school and not being able to be there.”
As it is for her namesake “My biggest struggle is trying to figure out my daughters wants. She has limited vocabulary. She’s a runner so I have to have a constant eye on her outside and have to make sure she has zero access to the front yard. If her routine gets messed up I have to be ready for a meltdown because it will happen. When she’s upset, which doesn’t happen often, she pulls hair, pinches, or bites while she is screaming. She doesn’t understand dangerous situations so I have to make sure to keep her safe at all times. for instance if I’m cooking on the stove top I make sure to use the back burner but she’s kept out of the kitchen with a baby gate. All doors to bedrooms, hall closets, and bathrooms are locked at all times. I would never trade her for what society deems a normal child as God chose our family to love and care for her. She touches the lives of those she meets and our church absolutely adores her. I have told people you never know unconditional love till you spend an hour with her as all she sees is joy”
Finally Jamie highlights the costs involved in bringing up a child with autism “We felt Ryder who’s 3 wasn’t ready for preschool this year. Our biggest struggle is finances! Only one person can babysit him, which is grandma. She can only handle him 2 days a week due to his meltdowns. That leaves daddy as his full time caregiver. I am ashamed to say I can’t handle my son due do to my back. So, I work full time, and daddy maybe gets 2 days a week. I gross Max $2,200 a month, Ryder get ssi disability plus whatever daddy can bring home. No credit cards to help the in between. Rent alone is $1000. Utilities and food. Don’t qualify for foodstamps. It’s stressful trying to make ends meet. Family gives us toys for ryders birthday. Each one has caused us nothing but grief and meltdowns. That includes gifts for my daughter who’s 11. But our boy is so beautiful and amazing. One hour at a time.”
So please do comments on these idea and share any advice you may have.
Many thanks in advance.