The Forgotten End of Autism




I spent last night in my room in peace. I went to bed around 11, watching a TV show and enjoying the silence of my house. My brother wasn't home for the first time in a while, and we were able to relax for a few hours. The night before, I went to bed at 11, frustrated as I'd just had an argument with my mum. We were both exhausted as, for the fifth time that day, we'd dealt with my 17-year-old brother having a meltdown over - I kid you not - the Teletubbies.

There is no physical way to explain to someone who hasn't experienced autism what the emotional labour is like on a family. It challenges one beyond what they think they can cope with, because it forces us to take a look at life's fundamental question: what is the point?

The issue I broach is one that is rarely expressed in mainstream media and politics - that autism is not and never has been one uniform block of distinction. The actuality is this: autistic people are no more alike than neurotypical people; the condition is an intricate web of varying aptitudes, inabilities and struggles. There will never be an 'accurate' depiction of autism because it is not possible to instill the qualities of every autistic person into a single caricature, and that is widely acknowledged across the autism community.

Even so, there is a 'general' notion of an individual with autism. Lacking social skills, including eye contact and perception of emotion and tone. Sensory overload, instances of stimming. Whether we mean to or not, when we hear the word 'autism', we construct an image of what we assume the person mentioned will be like. We do not think of the ignored edge of the autistic spectrum.

The forgotten side of the spectrum falls to the "low-functioning" children; the ones who cannot feed themselves without making a mess, or perhaps not at all. The incontinent teenagers, the barely verbal adults. Those whose 'mental age' is much less than their physical. People like my brother, Stephen, who seem to exist only in their immediate family circle.

For us, it is simple yet heartbreaking. Stephen will never be able to live independently. He requires constant supervision, can't talk beyond basic requests, can't use the toilet or dress himself; he can't so much as cross the road by himself. He doesn't grasp the notions of money and spending, or even of life in general. His autism is so severe that his world revolves around a rigorous routine of school and home. He thinks in numbers and colours and children's TV shows. In brutal honesty, I don't believe he knows what day it is. 'Mainstream' is a word that hasn't left our lips in years.

First of all, nobody truly recognises how tough it is merely to care for someone who needs assistance with everything. Stephen is 6 ft. 2 and has to be bathed, washed and nappies changed. Physically, and mentally, it is downright exhausting. His sleep schedule is non-existent and his meltdowns are unpredictable. His self-harming happens unexpectedly and can last for indeterminate amounts of time. These are the children you don't see in autism awareness adverts; headbutting walls, smacking their heads, nipping and biting and scratching. It is the most draining thing to devote hours upon hours simply trying to prevent someone from hitting themselves, and a task that seems so stupid and meaningless in nature when you know that, come a few hours’ time, it will simply happen again.

Secondly, there is no general understanding of severe autism sought. I mean, who can I tell? Family rarely if ever come to visit him, be it for reasons of ignorance or genuine lack of awareness. There is only so much empathy my employers can show me when they have never met him. I worry that friends won't comprehend, or that they won't want to know him. I positively panic that potential boyfriends will be put off by him, or reject the idea that he has to come first in my life. The media show nobody like him; journalists don't bother to highlight our situation. Politicians have never asked what we might need. We are completely and utterly alone at our side of the spectrum, in the dark and in the cold. 

I am 19; I should spend my days fretting about having enough money to go out at the weekend and passing exams to get my degree. My biggest fear about the future should be whether I'm going to achieve my dream job, what countries I will travel to. Instead, I worry about what will become of my brother. He understands nothing of pain and manipulation and danger. My brother is so bearing on the spectrum that he needs round the clock care, and when I am the only one left to do that, how will I cope?
                                                       
And you know what? I love him so much. I love him more than anything in this world, because if anything he is pure. He doesn't know anything of sickness and pain; he has no awareness of hatred. All he knows is his little bubble of love and care that we provide for him, and in some ways I envy him. He makes me laugh with his wittiness and smarts, and he has kept me going through some rough times. He is a positive influence on my life, and I am not taking away from what he is or has done for me.

But the reality is this: we are tired, and we are alone. Families on the severe end of the spectrum feel they cannot write into support groups, because often their experiences feel too extreme. It is impossible to ever establish a sense of normality, or to lull ourselves into the illusion that things will get better. Our children and family members are not just struggling socially, but struggling merely to exist, to function. With no consciousness among the general public of how hard it truly is, there is no relief from this feeling. We simply have to get on with it. We must continue to take care and love a person who will never comprehend what we have done for him, how much we have sacrificed for him, and will never thank us for it.
Understand this also: if you are part of a neurotypical family, you take much for granted that we will never experience. Family dinners out don't exist. Holidays could never happen. Stephen will never attend a school disco, bring friends over for dinner, or bring home a partner. I will never get to ask him, "do you want kids?" There will be no wedding for me to attend. Never will he have the satisfaction of a job, a home, a sense of fulfilment in this world. 

This is what makes my heart ache the most: my brother simply doesn't understand his own existence.

This is why, when asked the loaded and complicated question of, "would you take away Stephen's autism if you could?", my answer is yes. He doesn't understand his actions, or the consequences of them - the hurt and exhaustion, but also the happiness and love, that he brings on our family. He makes no decisions about himself or his future, and has no comprehension of any normal, everyday concepts that we grasp so simply. We all want the best for our children; all Stephen wants is a box of Teletubbies and a can of Diet Coke. 

We don’t have the luxury of forgetting about it. You probably don’t see these children often – families find it hard to take them out in public, as it is much too stressful and we are judged immensely. These children don’t attend your children’s schools; they simply pass you in traffic on a bus, so you don’t have to experience their presence. You have the luxury of avoiding "low-functioning" children altogether.  In a 24 hour, 7-week job, we do not.

The reality is that it cannot be taken away. Whatever becomes of us, we will continue caring for Stephen far into the future. All that I ask for in this time is awareness of the hardships autistic families go through in the meagre task of existing, of living at home. As invisible as we may be in everyday life, we are here, sacrificing normality in the name of love. Don’t forget about us.
Katrina xo


Stephen and I with his beloved Teletubbies. lol


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*The first somewhat mainstream representation of the broader spectrum of autism that I have ever come across is Louis Theroux's Extreme Love: Autism, which shows children attempting to navigate their way through a mainstream school, verbal children on the cusp of being integrated into "normal" life, all the way to children who are barely or non-verbal and have serious self-harm issues. For those willing to delve into the world of autism, it's a good start. It is available to stream on Netflix.

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EDIT: Wow! The response to this article has been truly, truly phenomenal. I've had a good few people try and contact me, so you can on the following:
Google Account: kahhtreenahh@gmail.com
E-mail: katrinamcd@outlook.com
Twitter: @kahtreenah_

Comments

  1. Really interesting and touching read, Katrina. Thanks for sharing your story and your devotion to your brother snd your family.

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  2. Thanks Marc! It's a long haul, but we get there in the end :)

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    1. Sweet, sweet Angel. You are not forgotten and I only have a faint idea of how hard it is for families. I am a support worker and my heart aches for the families and what they must go through. But darling don't loose heart or faith there are many people who "do" want to help and do know what it is like. I'm so so proud of you and what you are doing for your brother!!. Be sure to contact places like Sunnyfield, flintwood, sunshine, cerebral Paulsy alliance. These are just some organisations that can give Steven at least a little bit of social normality and give you a little break, even if it's just for one day a week. You need to nourish yourself too and get some rest dear heart. Love to you and prayers be with you.

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  3. Thank you about being open at your life. With your story more people will see, hear and understand this life with Autism.

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    1. Thank you Anne! That's exactly my intention. I do hope people come to realise it's not an easy road no matter where on the spectrum you fall.

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    2. Great article! I can relate my older sister is on the severe end of the spectrum and my son is more moderate. I take care of both of them and some days it can be a bit of a challenge. We feel pretty isolated nobody cares to come visit and it isn't always easy to take them both out. I have beaten cancer twice and these two are my reason for fighting so hard to live. I am terrified about what will happen to them after I'm gone. Neither one will ever be able to live on their own and there aren't to many safe facilities to place them in. Which is a fear most special needs families have. You can't truly understand the daily struggle unless you live it.

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  4. Yup the more we post - the more people who want to learn WILL LEARN - My daughter is 12 now and still mainly non verbal - and probably a toddler level mentally with communication. She doesn't have to severe behavior wise but she is just starting to get her hormones in so We Will SEE...I think she is mild to moderate but when it comes to language she has apraxia too so IDK if she will talk outside of DIVINE HEALING. Which we pray for all the time. I have friends with severe kids and it is bad and the therapies that may help our kids are out of reach because most of them are not covered. If your not on drugs to help put money in their pocket - they don't want to help us.

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    1. It's a horrible cycle! We are lucky to live in the U.K., so our help is free (though minimal). Stephen's behaviours have gotten worse with puberty but we're hoping they will calm down when he's matured. All the best!

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    2. Very similar to my son & family. Rarely I hear about families like ours

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  5. I'm with you Katrina. Thank you for putting my thoughts into words. So many more things I want to say but just can't find the words to say. You hit everything. Every single thing. As the mother of a child like Stephen, I also carry the guilt of knowing that my other children know their future and that when I can no longer do this they will take over and I know they do but DO THEY love him just as much as I do. To continue the daily grind. To continue to put their own needs aside. The "what if's" are enormous. What if something happens to them and they can't care for him when I'm gone? What if they end up with a spouse that can't handle it and they have to chose between him and their own children?
    Again, thank you for writing this. It's almost a comfort to know that we may be on two different continents but we know each other exist. I see you Katrina and you are a beautiful soul.

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    1. Thank you so much for this wonderful comment! As I often say, we walk in the dark but we do not walk alone. The daily grind is the best way I can describe this journey - the future is uncertain for sure but we still exist. All my love to you xx

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  6. Thanks for sharing my son 24 he has severe autism non verbal and can't communicate say word God bless

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    1. It's a hard struggle Angela but you're doing amazing. All my love xx

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  7. Hi Katrina, Thanks for sharing. My son has autism is 15 and still can't tie his shoes. But we did finally get him potty trained at the age of 13. He can talk, but does not converse. I am fortunate, he rarely tantrums, but he does have his moods. He can go out for a meal and I take him with me everywhere even into the ladies room. I can't send him to the mens room alone. I started taking him out to eat when he was small and we worked heavily on manners and what was expected at the dinner table. We eat at the table every meal and snacks. The rules are the same always. That makes behaving out normal. My son will be 6' 6" or so when hes done growing. I am 6 foot... but he is just about my height now. So take heart, there are others out there that know a good deal what it is like. That have a pretty good idea of what your day to say is like. You should see what you can do to socialize more with some of them. And thanks again for your story.

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    1. Hi susan, thanks for your comment and sharing! I'm so glad your son has got to the point of being able to function in public. He sounds like a lovely boy getting to grips with the world. All my love!

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  8. Thank you.Dov is 25 now. Needs help with everything- except sneaking into the fridge at 3 in the morning and breaking two dozen eggs before going back to bed covered in them. (Eggs are now
    hidden with the cleaning supplies) And yet I can easily remember the days when people said "oh he's autistic, what's his talent?" The world has gotten smaller and smaller for Dov and it's gotten smaller for his family too. Can't really blame anyone, but hanging out with us is really only for people who have known us for a long time, who aren't phased by a naked 6'2" person suddenly showing up in the kitchen hoping someone will make him french toast midnight.New friends are hard to make. Spontaneous, serendipitous evening don't happen too much because even though we have been parents for 25 years, we still need a babysitter.
    The thing is probably 40% of people with autism are like Dov. They are really ,really challenged. They are loved but they are lonely, their families are worried and tuckered out. They feel forgotten. Thanks for writing this

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    1. We have a lock on the fridge door because of this. And inside we have the butter and cheese locked inside a lock box to keep out our autistic 29 year old yogi bear for when we forget the first lock.

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    2. Jon, I feel that on every level. I feel like I can't introduce Stephen to other parts of my life and it's a lonely one for us all. Sounds like Dov is loved beyond belief though, and as hard as it gets remember you're never truly alone. All my love x

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    3. Katrina,
      You are a sweetheart. It';s funny, my wife and I founded Cure Autism Now, which became Autism Speaks and we were the family that brought RPM (which helped another one of your readers) to the states. And RPM was helpful for a while--particularly in keeping everybody's spirits up for a few years and it made people around Dov treat him better. But he does not use it a lot, and it's become really something we do in the family rather than outside. I don't regret any of the big efforts we made to foster research and new treatments, even though they did not yield that much for us. But after having tried everything and gone sort of bankrupt in the process, I wish I lived in a society that embraced families like ours instead of making us fight day and night for the most basic services.

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  9. Thank you, that was perfect ! you are so spot on , i am the mother of a severely autistic
    23 year old who is non verbal and has severe behaviors so severe he had to have brain surgery
    from banging his head and almost died. he hurts himself and others and as we speak is in
    a crisis unit to help manage his meds. we have tried everything to help him . some how I feel like we have lost a sense of yourselves. It is hard for people to understand I think most don't want to.


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    1. Definitely! I feel as though if people forget about it they can ignore that it exists - that we exist. I hope your son's behaviours get better and you find a little peace with him. All my love xx

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  10. I was so touched to hear you say 'yes' you'd take your brother's autism away if you could. That's so honest and brave of you x

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    1. Thank you Bee! I've gotten some negative comments about it, but fortunately from people who don't actually have the same experiences so have no input on my life. All my love xx

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  11. Love to all of you people going through the same as us in differing degrees. Virgin Media broadband and TV went down late last night. As a family we can live without the TV for 24/48 hours - but Luke is constantly declaring "bloken" and asking "Tom fix it". I wish their engineers knew the effect it is having on this young lad without his You Tube and Netflix.

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    1. Ohhhh yes, we've had this before! "Man's going to the shop's fixing the red laptop" because YouTube won't load. Wild how a minor inconvenience to us could be their whole world. All my love xx

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    2. VirginMedia actually have a scheme for "Special Needs" homes as they call it. It means you will be made a priority and have an engineer to your home within 5 hours. I know because I have it myself ( I am disabled with an autistic teen). You need to ask to be on the scheme. They send you a form for your GP to sign Confirming the "disability" merits it. I stated I have an autistic son and I have Ehlers Danlos Syndrome- I was immediately accepted. Please Do call them and ask about it ok?

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    3. Amazing to hear! We're definitely going to do that, thank you :)

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  12. Very heartfelt Katrina, thank you so much for sharing, my 4 year old grandson is on the spectrum and I understand much of what you wrote, May our Creator walk with you and your family on this path of life and bring to you the strength you need to fulfill not only your brother's life but yours as well

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    1. Thank you so much Darlene! Spectrum kids can be difficult but they're also the most loving and amazing kids. Thank you for your kind words xx

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  13. As the parent of an adult son with autism, and having experienced decades of what you describe, I want to thank you for this piece and for your love for your brother. It is so hard to get across the impact of autism on family life.

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    1. Thanks Timothy! It's taken me a lot of hmming and hahhhhing about posting, but I decided it's better for the world to know than not. Solidarity on your journey, we got this!

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  14. Hard read, but so very honest... Our four year old was diagnosed two years ago. It is exhausting xxxx

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    1. Thank you so much! Your love does not go unnoticed. All my love xx

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  15. Hi I too have a son with profound challenges but we have found something called RPM rapid prompting method that has enabled him to spell to communicate it has completely changed the course of his autism as well as our family life and structure he is able to communicate and many behaviors have calm down tremendously (he is on meds though ) and I think The one thing that has changed so dramatically in his life is no one views him any longer as a person whose brain does not work his brain works fine he is brilliant and his body just does not cooperate with that brain he speaks and tells us he's not in control of his body it is a brain body disconnect none of us treat him like he has a simple mind anymore so when you speak of your brother and his abilities I think you need to change your perspective assume competence and give him a lot of respect and dignity and talk to him like nothings wrong like you get him this was life-changing for our son he is so much more a part of the world now and society he tells us he felt invisible for so many years and now he's not please look into this treatment for your brother it is an academic method that eventually leads to open ended communication since you are in the UK you can contact Sue finnes. She has a Facebook page called unlocking voices I hope to God you will consider this as I cannot underestimate the changes that have come into our life and believe me my life was very much like yours before Rpm but it is nothing like that now My son has friends and a life and he has meaning to his life and everyone that meets him is amazed that his mind is so intact and aware I hope the best for you and your family and really do appreciate your beautifully honest story!

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    1. Thank you Barbara! At this stage we will try anything. Thank you for your advice xx

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    2. Yes, Katrina, the Rapid Prompting Method changed our lives, too. My son is only minimally verbal, and appears to not understand his surroundings at times. He still loves Thomas the Tank--or so it seemed until he learned to communicate through RPM. Now, he is happier, more independent, and being educated at the level that is appropriate for his actual age. He was recently educationally tested, and is "above average" in all measures. Further, he has been assessed by our local autism centre by a communication specialist, who determined that, indeed, my son is actually the author of the words he types (he learned to type independently through RPM). You are a fantastic sister, and you can bet your brother appreciates your love. Please know that he just might be much more cognitively capable than he appears on the outside. Best to you.

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  16. Your courage, your love, your devotion, your raw honesty are all incredibly inspiring. Thank you.

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  17. Yes please find some videos about RPM on youTube...it will likely help your brother and change your mind about what he can do and improve your situation ..RPM is available in the U.K.

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  18. Oh Katrina, as a parent of two boys (one on the autism spectrum) your insight is very precious to me. My kids are still younger but everything you said helps me try a little harder or differently for my NT son. Thanks for this!!!! I need a map to navigate parenting my NT son too!!!

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    1. Hey Kiran, so glad this blog has helped you! Any effort you put in, big or small, changes the course of how life will be for them and it sounds like you're doing a great job! Just know that we NT siblingsunderstand that we are loved the same amount, just differently. All my love xx

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  19. Oh Katrina, as a parent of two boys (one on the autism spectrum) your insight is very precious to me. My kids are still younger but everything you said helps me try a little harder or differently for my NT son. Thanks for this!!!! I need a map to navigate parenting my NT son too!!!

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  20. Thank you for sharing what is always in the back of my mind, but never talked about. My soon to be 15 year old is much like your brother but also has a vision impairement. I can only hope my 9 year old daughter will grow up to be half the woman you are!

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    1. Thank you so very much. All my love xx

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  21. Katrina, thank you so much for writing this. I am sending the link to my three daughters, ages 32, 28 and 26, each of whom could have easily written the same essay when they were 19. Their "little" brother will be turning 25 at the end of September. We have planned a blended-family trip to Disneyland with my ex-husband, his girlfriend and her two daughters, all traveling from Seattle, because the Magic Kingdom is truly magic to my son, and it is the perfect way to celebrate his 25th birthday. It was my oldest sister's idea, and everyone jumped on board immediately, because as challenging as it is to travel with my son, it is so worth it to spend a day with him at his "happiest place on earth." It will literally take everyone of us to make the trip a success and it will no doubt be exhausting. People will stare and we will smile and ask them if they have any questions about autism. (It is amazing how many people actually say, "Yes" and go on to explain they have a young relative or neighbor's child that they think may have autism.) It is challenging to take my son with me to go shopping or run errands but it is more challenging to find someone to care for him, so he goes with me, and we do the best we can. We frequent the same places in our community on a regular basis, and it has become part of my son's routine, and the staff at the places we shop have come to recognize us and treat us with kindness and understanding. I don't want to diminish how challenging these outings can be but in my experience they are worth the effort.

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    1. I meant to say "It was HIS oldest sister's idea." Not my oldest sister. : )

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  22. I see you messaged me on face book. Please friend me and you can look through my many posts about rpm! I'd be happy to speak with you as well. It is LIFE CHANGING !! Please also reach out to Sue Finnes in the U.K.

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  23. Amazing paradox of love, challenge, exhaustion and yet love. Hang in there. Love your honesty.

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    1. Thanks Uma! I appreciate the support.

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  24. It's crazy... word for word describes my life, except my brother who is 21 has meltdowns over Winnie the Pooh instead of Teletubbies. Thank you so much for sharing. I would love to be able to connect with you since we are the same age going through the same struggle with autism.

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    1. Hey Delaney, any time! I've left my contact details at the bottom of the article. Thank you :)

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  25. It's crazy... word for word describes my life, except my brother who is 21 has meltdowns over Winnie the Pooh instead of Teletubbies. Thank you so much for sharing. I would love to be able to connect with you since we are the same age going through the same struggle with autism.

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  26. Thank you so much for writing and sharing this. My daughter sounds very much like your brother. I am going to give this article to her brother and sister to read. Thank you thank you.

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    1. And thank you for reading, Susan! Your support means a lot. :)

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  27. As a mother of a child on the spectrum, thank you for your honesty. My sons not quite as 'low functioning' as your brother, but he's close. And I very often feel alone. I hope when I'm no longer around, my daughter will care for my son the way you care for your brother. I hope you still take time for you and still have dreams of your own. You deserve it too!

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    1. No matter how much people can relate to you, your experience will always be different from others, and so it's very easy to feel alone. Take heart in the fact we are here, we are everywhere, and we are not alone! I have big dreams about making the world a better place and in many ways Stephen helps, rather than hinders, these dreams. All my love xx

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  28. Thank you so much for sharing! Reading your words made me realize that your family and mine are not alone! You quantified beautifully what anxieties we all go through! Especially, with dating and friendships. Good luck to you and your family!

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    1. Thank you Ketsia! Your support means a lot, and we are definitely not alone. I've found that I have many friends who have time for Stephen; if they don't they're simply not my friends. Thank you, and you too!

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  29. Brilliant blog. Sums up our lives so well. I have shared it numerous times on fb and hope people take heed. Thank you. And you are doing a brilliant job and your brother is lucky to have you. Xxx

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  30. Thank you Jenny! It means a lot coming from a family similar to ours. xxxxxx

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  31. I have a mildly autistic son and am often overwhelmed. I cannot begin to imagine your life, the heartache your mum feels. Mine to some nth degree, I guess. I want you to know I see you. You are not invisible. I hope you and your family find the respite you need and deserve so that you can have a holiday, go out on a weekend, study for exams. I hope that more than anything. Peace to you and yours.

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    1. Our struggles are not at opposite poles and so I know how exhausting it can be in any case. Thank you so much xxxx

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  32. Very good post, the government needs to understand and care enough to change things for carers. You and your family have a really tough job. The physical care side is clearly very demanding. I just wanted to say however, that so-called "high-functioning" autistics and their families have it no less easy, even if the nature of some of the difficulties is different, the severity is not. Normal to high IQ in an autistic can be a very dangerous thing. Professionals don't understand the vulnerabilities, 70% are forced into mainstream school where they are bullied mercilessly and suffer poor mental health, many will develop mental health difficulties from struggling so much to exist and the self-awareness of their differences can be devastating. They still have meltdowns and attack parents and destroy property, self-harm including banging heads on floors and walls. They become suicidal. Their parents are falsely judged for protecting them according to their abilities, as emotionally harming and/or fictionalising their difficulties. Sometimes autistic children are ripped from their families permanently for these false accusations. Professionals are so autism ignorant that they do not understand what the vulnerabilities are, they just see a high IQ and superficially good verbal skills and see the individual as 'normal'. They judge that the autistic child should be doing everything a NT child is and doing it the same way and to the same degree. These attitudes can be very harmful to autistics and their families. High-functioning individuals often mask at great detriment to themselves and this means professionals in schools and other settings don't believe parents. Parents have to battle incredibly hard for support and help because it's such an invisible disability. Severely autistic children/adults with low IQs will be seen to be significantly in need and provided some support in recognition of that without too much of a fight. It's not the same for those at the 'other end' of the spectrum. Parents are frequently forced to tribunals for educational support and the right school. Reasonable adjustments are denied in all areas of life because people don't recognise how significant the person's difficulties are. So-called high-functioning children also do have meltdowns in public and the judgementalism can be even worse because they are verbal and vocal and the public judge it is just a badly behaved child and the parent is rubbish at parenting. The demands on parents can be enormous. They may have panic disorders, phobias, depression and anxiety. Many also have co-morbid ADHD which makes things even more difficult. I just wanted to dispel the myth that high-functioning is an entire misnomer and that what you said about the 'forgotten' side of low-functioning autistics. Because high-functioning are just as forgotten, it's like being in a crowded room but still being lonely. The expectations are enormous on them. Their own expectations on themselves are also enormous due to being very self-aware. So really, they are hidden in plain sight.

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  33. Thank you so much for sharing this. This fits my family so well. My son is now 25 yrs and extremely low functioning. It has been so heartbreaking trying to figure out his future, & it is a lonely road when you feel like the only one.

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  34. Our daughter is 7 and wow this is sooo true! Its a lonely place to be, and a good article such as yours really hits home for me. Thank you for sharing your thoughts and being brave to do so.

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  35. "World of broken pieces" By Sean Michael McCarthy

    It's a world of broken pieces,
    too many I can't mend.
    The screams for help they deafen me,
    my mind to jumble send.

    It's a world of many colours,
    so bright that me they blind.
    Endless is my frantic search,
    for end of rainbow find.

    It's a world of silent whispers,
    I hear them when you look.
    Confusion raises voices,
    inner harmony now took.

    It's a world that's lost all feeling,
    no pity, love, just woe.
    The snigger point of fingers,
    everywhere I go.

    It's a world that lacks compassion,
    tolerance is lost.
    Laughed at, labelled, ridiculed,
    my broken heart the cost.

    It's a world that doesn't want me,
    deems me the wrong odd fit.
    Wants to put me in the corners,
    cone shaped hat with D on it.

    It's a world that has no patience,
    a rush for here and now.
    Obey all rules and follow,
    be grateful, thank you, bow.

    It's a world of broken pieces,
    I try to jigsaw mend.
    So time consuming is the task,
    I can't my own soul tend.

    It's a world that doesn't recognise,
    or real person see.
    Scorned with tut and roll of eyes,
    labelled disability.

    It's a world that doesn't understand,
    my soul that's trapped inside.
    I didn't choose this body trap,
    don't enjoy this broken ride.

    It's a world of self importance,
    the matter things forgot.
    The crave for things you deem success,
    what next when all is got.

    It's a world that's lost all empathy,
    no time to take for learn.
    Grant you take of simple things,
    the dreams for which I yearn.

    It's a world of little boxes,
    awaiting green yes tick.
    Red cross is my majority,
    call me stupid, think me thick.

    It's a world of frantic rat race,
    no feelings have you felt.
    Too busy staying upright,
    so fast conveyor belt.

    It's a world that drowns in tear drops,
    you think of it as rain.
    I see, I hear, I feel it all,
    it stabs my heart with pain.

    It's a world of broken pieces,
    my mind it sees it all.
    The screams for help they deafen me,
    my Autistic stops my fall.

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    1. devastating, but amazingly written

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  36. "In fairies they believe" By Sean Michael McCarthy

    Autistic have their innocence,
    in fairies they believe.
    Unicorns have Angels wings,
    and wands do magic weave.

    Unknown to them of world so cruel,
    deceit and greed of man.
    Mind's so full of happy thoughts,
    age froze like Peter Pan.

    Eyes they see through rainbows end,
    the world in coat of gold.
    Our colours fade to black and white,
    we fail, to magic hold.

    Autistic laugh the jokes they hear,
    sings voice inside their head.
    To us the sound is whispered doubt,
    regret, or fear and dread.

    Fingers pluck at magic strings,
    hands orchestra the air.
    Imaginary make believe,
    the friends of always there.

    We see and stare with pity eyes,
    we think them incomplete.
    We look away or cross the road,
    avoid the hello greet.

    Autistic are the pure of soul,
    exempt corrupt from all.
    Left dazed from thoughts of incomplete,
    wings lost, how Angels fall.

    The joy delight of simple things,
    like favoured cartoon show.
    Watch a film a thousand times,
    then laughs like didn't know.

    Questions asks if things done wrong,
    cruel words that people say.
    But why, but why, what happened next,
    remembered cries that day.

    Autistic forget the happy things,
    to repeat, enjoy again.
    The bad or sad will haunt their dreams,
    flash back all, exactly, when.

    Don't judge your looks of disapprove,
    nor tut and shake of head.
    Leave them be in Never Land,
    their magic free of dread.

    Unicorns have Angels wings,
    and wands do magic weave.
    Autistic have their innocence,
    in fairies they believe.

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  37. "Feeling scared" By Sean Michael McCarthy"

    I don't like being angry,
    it's because I'm feeling scared.
    My waving hands are anxious,
    a plea for help, teeth bared.

    When you hear me shouting,
    it's not me, that's mad, at you.
    I have to yell to see the way,
    a path to get me through.

    The tears I weep aren't anger,
    but drops, my soul does leak.
    I cannot find the words I need,
    my brain won't let me speak.

    My rage, not understanding,
    your fear, the things I do.
    I pinch, I grab, i squeeze you tight,
    who will help me, who, can you.

    Come comfort me with reassure,
    soothe your voice so calm.
    Keep me safe from all around,
    don't let me come to harm.

    I'm sorry that I'm shouting,
    I didn't mean to hit.
    This confusing flooding of my mind,
    I just can't cope with it.

    Don't throw me looks of judgement,
    please, no tut and shake of head.
    A smile of pity, of understood,
    let calm nice words be said.

    My waving hands are anxious,
    a plea for help, teeth bared.
    I don't like being angry,
    It's because, I'm feeling, scared.

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  38. God bless you and your love and patience and understanding compassion for your brother. I have 2 daughters who are likewise towards their little brother. You hit every aspect of Autism right on the button. Respect. Regards Sean

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  39. "The world through rainbow tears" By Sean Michael McCarthy



    I'm stuck in Peter Pan mode,
    never growing old.
    My brain is wired different,
    or so I'm always told.

    I have no fear of danger;
    I fail to see the threat.
    There’s no demon in my shadows,
    out for me to get.

    I've lost the key to Never Land,
    will I ever get it back.
    I'm stuck outside of paradise,
    lost the way home track.

    My mind is full of innocence,
    no anguish fear or woe.
    The world is full of rainbows,
    everywhere I go.

    You jump at all the shadows,
    the ones I fail to see.
    Your outlooks always cautious,
    it’s better being me.

    I smile and laugh at pictures,
    I see inside my head.
    You think that I am special,
    needing guidance must be led.

    Can't you see I'm normal,
    like Angels in the sky.
    Living life with laughter,
    with spirits flying high.

    Who's to say I'm different,
    and not original.
    How are you so certain,
    it’s not you that's dropped the ball.

    You fell on down from heaven,
    it left you full of dread.
    It must have been a long drop,
    did you land upon your head.

    My mind it sees a rainbow,
    in the smile of every child.
    You label me as simple,
    autistic folder I get filed.

    I'm not a word or label,
    but pure love of heavens hall.
    Let go from the Never Land,
    to help all those that fall.

    My mind is always busy,
    counting up the deeds.
    Reports I send to Angels,
    who tally up the needs.

    The numbers whirl round faster,
    more and more each day.
    Is it any wonder,
    I fill my days in play.

    I keep my thoughts so simple,
    the innocence of young.
    It helps to process info,
    and hear what's needing done.

    Stripped right down to the basics,
    what everybody needs.
    Sleep and love and laughter,
    ensure the spirit feeds.

    I'm stuck in Peter Pan mode;
    it doesn't mean I'm dumb.
    My mind is swamped by colours,
    it sends my conscience numb.

    I see and I remember,
    the world through rainbow tears.
    You don't see magic colours,
    lost in shadows of your fears.

    You chase around in circles,
    lost keys to Never Land.
    All alone in darkness,
    your lonely spirit stand.

    Endless is your wonder,
    of Angels in the sky.
    Tumbling goes your turmoil,
    and your questions why.

    Cherubs fill the paradise,
    floating through the skies.
    Singing songs of love,
    with pure soul lullabies.

    I see the world in colour,
    bright and clear and pure.
    Brush away the shadows,
    at fingertips the cure.

    You fail to see the beauty,
    a sky so clear and blue.
    I cry my tears of rainbows,
    lost magic you once knew.

    Why did I leave my Never Land,
    my world of Peter Pan.
    Trapped forever childlike,
    inside body of a man.

    ReplyDelete
    Replies
    1. Thanks for these beautiful poems Sean! They've brightened up the comments section immensely. :)

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  40. Amazing post Katrina, thank you for sharing.

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  41. This comment has been removed by the author.

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    1. You are a compassionate and wonderful person to be helping in the care for your brother. Wishing his autism away, blaming his autism is misdirected. If he were not autistic, he likely would be severely handicapped. It sounds like he is disabled cognitively snd has other mental issues other than autism. There are people who have strong signs of autism without intellectual disabilities and do not have the behavioral issues your brother has. Yes, autism is in the mix but if it should "go away", some of his most harmful behaviors will not

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    2. This comment has been removed by the author.

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    3. Hey Rebecca, thanks for the comment! While I appreciate your insight, unfortunately my anger is not misdirected. Stephen's brain function is normal and he has no genetic conditions. His struggles come entirely from his autism. Even if they did not, it is the behavioural issues that are the most exhausting, thus removing them is still a wish of mine. Have a great day!

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  42. YES. THIS. Thank you so much for sharing your thoughts - your love and frustration and FRUSTRATION and exhausting, exhaustive love - so eloquently. I'm the 29-year-old baby sister to a 30-year-old low-functioning autistic woman who is, in many ways, my family's entire world. She spiraled into autism the summer that I was born, and autistic Stephie is the only Stephie I've ever known. We're incredibly fortunate to have Stephie placed in a wonderful group home program that's been a godsend to my family (perhaps to Stephie most of all, who has flourished having the kind of routine and constant engagement that we simply couldn't provide for her at home), but I know as sure as I know my own name that her long-term care and advocacy will, someday, fall on me - and frankly, that's the way I want it.

    I recently read a book that I think you and your readers might find interesting. It's called "How to Be a Sister: A Love Story with a Twist of Autism" by Eileen Garvin. Eileen's sister Margaret is slightly higher functioning than my Stephie, which made me burn with jealousy at some points in the reading. That said, there were aspects of that book that were so real, so raw, so RELATABLE that my first visceral reaction was to be offended - as though the author had plucked a private thought straight from my brain and shot it back at me! How DARE she? That's MY life! She can't KNOW that! Anyways, I stand by my conviction that if anyone wants to really, truly know who I am, they have to read this book.

    I'm in awe of your maturity, introspection, and involvement at age 19. If I can give you any advice as someone in your position but 10 years further down the road, it is to know when to take a step back and take care of YOU first. I readily admit that this is something that I'm bad at, but I'm working on it. Yes, it feels selfish, and the sense of familial obligation you've cultivated being so hands-on in your brother's care may make it feel frankly impossible to have peace of mind while your family is struggling (I still grapple with the guilt), but I wish I had focused more on being a 21-year-old when I was 21. I'm still paying for it now.

    You deserve to be a 19-year-old. And the world also deserves the informed input, ferocious work ethic, and humongous heart you have to offer, as a Sibling of Autism. The greatest favor you could do for your brother, whom you so obviously adore, is grow into the kind of self-reliant, self-assured, strong adult that you'll BOTH need when it's just you and him against the world someday.

    Keep it up, Katrina. I have every faith in you. Let me know if you ever want to chat!

    -Marie

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    Replies
    1. (My goodness, my apologies for the duplicate posts; I'm not Google +'s biggest fan.

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    2. Ahh Marie, you have me nearly in tears! Your perspective is most welcome and Stephie sounds loved beyond belief. I'm lucky to have an amazing mother and father and a supportive sister who allow me to be me, go to work, pursue my dreams in university and have a life in general. The future is uncertain but I am certain that we are loved and will come through the other side. All my love xx

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  43. I was so touched to read this. I am a teacher and general all round people lover and agree it's a crying shame disability isn't better represented in the media as with so many other things. I am also a creative person however and always looking for things to express with my work. I would appreciate knowing what capacity you'd like to see autism in media? Would it be more meaningful from a documentary standpoint that show more realities of the other end, or more of a creative standpoint in which the person with autism is just a character and their autism is not the focus? Probably a bit of both I imagine. Thanks for your help.

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  44. My son is Autistic and he is 26 now. I have never worked so hard in my life as I have done with my son. I had no outside help with my son so it was down to me and my daughter. I am still his carer and he still has his issues. I will say, my daughter suffered in her own way due to my sons issues. I did the best I could at the time but I know she missed out on so much. My son taught the teachers in his school about autism and believe me that was no easy ride. Help wasn't available then as it is now. When he was diagnosed at 11 I was given a book 'A teachers guide to Autism' and left to it. I had to give the book to the school. Our biggest issue with school was when he was leaving high school. Work placement. My son couldn't get one and I was told no employer would want to take him for job experience due to his Autism. He was getting ready to leave school and they were telling me he had no chance of a job. I found him a placement with extreme sports and he did very well through the experience. He did get a job doing the same at Halfords. Life is the most difficult job when there is autism in the mix..

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  45. I cried while reading your words. I live this every single day. I am all alone with my son. No family support. No friends really come around. No "baby daddy" in the picture. I am terrified of the future,. I feel like my son and I are walking on the edge of a very tall cliff and one incident, one wrong step--we both got tumbling down and lose everything. If I can't work we'll be homeless. I am beyond exhausted. A fragment of my former self. I love my son with all of my being. It's just so hard. Thank you for voicing our hearts and our struggle for all of us. Seldom have I seen such an involved and dedicated sibling. You are someone really special. God bless you and your family. <3

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  46. This comment has been removed by the author.

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  47. Wow! U are an amazing writer. I wish I could introduce u to my daughter. She is in the dark area too, however, on the opposite side as u. She cannot stand her brother and wants no relationship with him...for good reasons. She grew up hiding behind furniture...

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  48. This is so us! My daughter is 13 and my son who in on the spectrum in 11. Only difference is he is toilet trained. But the hardship we go through is beyond anyone's understanding. And the unconditional love that we get from those innocent souls are priceless.

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  49. You write that 'autistic people are no more alike than neurotypical people', and this fits my short definition of autism: ultimate individuality. And while autism comes with weaknesses in some areas (mainly social), it also comes with strengths such as the ability to focus intensely on matters of interest, resist peer pressure and come up with original ideas (thinking outside the box). I have written an article explaining our condition (in collaboration with the autistic community to make sure everybody can identify) at http://franklludwig.com/autism.html which has helped a lot of readers get a better understanding of us.

    As for his level of his understanding, many previously 'low-functioning' individuals who were written off but eventually found their voice (such as Carly Fleischmann and Jacob Barnett) have stated that, even if they didn't react or respond, they were aware of everything that went on around them and everything that was said about them, much to the embarrassment of the others.

    Also, you point out a number of things he, in your opinion, will never be able to do. This is a self-fulfilling prophecy because we are easily discouraged, and if you don't believe in our abilities, neither will we. I think researcher Bill Jenson phrased it best when he stated that 'if you drop your expectation level for a child with autism, they will drop to that level.'

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  50. Thank you Katrina. Thank you for being a wonderful sister. My sweet Molly is much like your brother but has no sister or brother, let alone one as caring and understanding as you. My constant worry is who will take care of her when we are gone. I am so heartened to see there are young siblings out there like you. Thank you for that ;-)

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  51. Katrina it's as if you are living inside my head and writing my thoughts. My son Frank is on the forgotten end also. He is 25, non-verbal with behavior issues as well. Our public outings are very limited. I often wondered if people even knew we existed. Even at sensory friendly events they are kinda pushed to the side especially if they are making noises or stemming. My family is very supportive and they love him very much but I still live with that fear of what will happen to him if something were to happen to me. That fear is there because services and resources are so limited one they become adults. So, I keep praying and trusting that God will keep him and provide all that he needs. Praying for all the families including your. God Bless you and thank you for sharing our thoughts.

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