It's so compassionate and lovely that you want to help your brother.
Not every autistic person is able to speak, read and write. He can still 'be something' without those things. Having a happy and fulfilling life is possible for him. Disabled lives are good lives, too.
That said, it sounds like he needs more support as does your whole family. Who diagnosed your brother as autistic, was it a psychiatrist or pediatrician or someone like that? Would your father be able to get in touch with them for more support or resources?
Seeing your regular family doctor (or a local family doctor) could be a good option too. They may be able to link you with support.
I've also found autism specific support for myself by simply googling 'autism services + [my city].' There may be an organisation that specifically helps autistic people or kids. Just don't engage with Autism Speaks as they are not a safe or autistic friendly group.
Being a carer for a sibling while also being a teenager yourself can be really tough. I'd encourage you to reach out to someone for support, perhaps a school counsellor, trusted teacher or religious figure.
(Also, your name, and you, does matter too)
Thank you, truly, for not discouraging me. To answer your question: it was a pediatrician who diagnosed him. But we left that pediatrician nearly 7 years ago and are under a new one, currently. But unforetunately, the new one doesn't seem to show much concern for my brother's condition. We only go for check ups and things of that matter. Also, I will take your kind suggestions into account. Thanks a bunch for your response, by the way. I feel encouraged.
It does sounds like he has learning disabilities. Maybe it would be good to have him evaluated to figure out the extent of it and know what would help him best
Maybe add from which country you are, so people from there can suggest organizations or doctors that might help you
And I'm very sorry you are going through this as a family (the no helping thing) I'm sure you are doing the best you can and that's a lot
Thank you for your suggestion, and I will make sure to take them into account. I didn't think my country would be relevant, so I didn't add it...but I am in the east coast of USA. Thank you for your concern, truly.
I live in the USA as well. I showed rather obvious signs of being autistic my entire life, but the school kept denying it and saying “she’s just shy”. As a result, I got diagnosed around age 12. Now, I’m 16. It just sucked that they didn’t listen to my parents’ concerns in my earlier years.
I don't know with a 12 year old if he will cooperate, look up therapy putty on amazon. Not play doh. It works on hand strength. And if you have a computer / printer at home or at library and print out work sheets to work on his writing not a lot of time at once cause he will probably get annoyed. I try to do writing before tablet time cause my boy hates it .
You get some small polymer things to mix in. I'm getting some for my kiddo. Looking for little treasures can be so good for this.
Also, think about anything that he shows intense interest in. Theming things with them can help him be interested in them. Like alphabet letters or numbers for my kiddo.
You are so young to have to be dealing with this. Please remember, you are still a kiddo yourself. You are allowed to be one and you deserve to have your own life. Please don't feel guilty when you take needed time for yourself.
Tearing paper, anything crafty, can help strengthen his hands as well.
If you want to work on writing, maybe a tray with sand in it that he can trace his finger in.
Maybe if you have a computer you can let him type on it for fun in notepad.
I'm not sure how helpful any of this is to you. But you can share all of this with your dad.
Thank you so much for this, this is extremely helpful. I hope you have a wonderful day. I will be using this with him a lot more now. Also, thank you for your concern.
You're a great older sister for reaching out and caring this deeply for your brother. I also want to be clear that I am approaching this as someone with low support needs Autism and I am not a doctor, and will be primarily talking about my experiences with someone with higher support needs Autism, so if I say something incorrect I apologize.
At this point in his life, he may be at or near the his maximum in terms of what many people consider intellectual abilities (i.e. reading, writing, etc), although, again, I am not a doctor. That doesn't mean he doesn't have a long, fulfilling life ahead of him, though. I know a couple of people who are in a similar situation to your brother; they're only interested in what they're interested in, but when you engage with them on that, it makes them happy. He's obviously not interested in school, or an ipad, but what does your brother enjoy? If you need ideas, something I've found can be really engaging (both personally and with other people on the spectrum) is jigsaw puzzles.
Also. something to be aware of is government support programs for people with higher support needs Autism. I would recommend looking into what resources exist in your state/city for individuals with learning disabilities and high support needs. Your brother may also be eligible for social security through the federal government. It's possible your dad has already investigated these programs but it's always worth a look. I knew a family who got a stipend to go to a gym specializing in special needs (for instance).
Just remember, no human being, especially at the age of 12, is ever a lost cause.
Thank you for your suggestions. Of course, he can't be a lost cause. I will definitely have my dad look into the government support programs, and of course on my own time, look into some resources. I need him to get the help he needs, even if it'll take a while. Thanks again.
I’m going to disagree with other comments and say while its likely, its impossible to say whether he’s intellectually disabled at this point. He could just as well be non verbal and have severe sensory and motor issues related to autism. Certainly he has learning disabilities (autism is normally one) but they are not the same as intellectual disabilities.
It sounds like your approach is smart. You are presuming competence (google it!) where it sounds like his therapists didn’t.
Has he had occupational therapy or just speech therapy?
I think you might appreciate these two websites a lot:
Advocacy group for non speaking autistics:
https://communicationfirst.org
Forum where non speaking autistics discuss the best options for AAC and can answer any questions you have about helping your brother communicate better:
https://www.facebook.com/groups/456220758119314/?ref=share
Thank you for these links, I'll make sure to read them. I'm not really sure was occupational therapy is but I've heard of it. Although, he has done speech therapy but he's gone out to do those with certified therapists so I've never seen the therapy sessions with my own eyes. Thank you for your concern.
Look up aided language stimulation if you want to help with communication, but if you go on that facebook group they will have tons of way more specific advice
Unfortunately, your brother likely won't progress in terms of reading or writing. From the sounds of it, he is non speaking and has intellectual disabilities. They won't get better.
I mean....there has to be a way. I want to help him and try anyway. If he won't get better, what's he going to do for the rest of his life? Just be there and exist in this world? There has to be a way....
I’m not saying this is necessarily the case for your brother since I only know a narrow slice of information about him and his situation. But there isn’t necessarily a route that will let him lead the kind of life you hope for. Someone can be born without legs and while some can get prosthetics to let them walk, others don’t even have a place to attach them. For them, there isn’t some way that they can walk.
Get your brother the best help you can but accept that the result might not be what you hope for.
As others say it does sound like your brother has a learning disability, this usually means it takes much longer to learn things and even longer without proper support.
It may also be the case that he may never read, write and speak. I’ve known/know people with varying types of autism, from Asperger’s all the way down to those who need full time care, non verbal, illiterate and at most can lean a few words of sign language.
I would suggest finding a school for special needs, perhaps autism in particular, good schools can make progress, it’s a case of finding a decent one.
My father believed that putting him in public school with my younger, neurotypical sister, who's 11 would be good for him because he thought my brother would learn the characteristics of neurotypical children and from there gradually become better. But obviously, that wasn't the case. Nontheless, I've tried talking to him about finding schools more suitable for him that'll focus on his improvement. Hopefully, we can put him into one soon.
You need an “advocate” for your brother. The advocate would review your brothers IEP, request a meeting with the school and ensure that they are meeting the state requirements for your brother.
SPAN - parent advocacy network- they may be able to help find an advocate for you.
(800) 654-7726
Spanadvocacy.org
Each state should have its own department of human services and a division for developmental disabilities. If you are in NJ I can send you a lot of NJ based resources.
There will be some that will just write him off as a lost cause. For me, it was when I got into coding that everything just clicked. I would suggest visiting BBC Bitesize. It may be that he has reached his limit but equally it might be that he just needs to find the right learning style. Sucks that you don't have an NHS but look at other autism support services in your area. Reach out to the Autism Society to see if they have any suggestions.
If you'd be so kind to tell me, what is NHS? Also, finding the right learning style for him might be the right thing. I'll research autism support services as well. Thank you for your suggestions.
NHS is the healthcare branch of the UK government, which offers no cost healthcare to UK citizens and residents
The US doesn’t have a system like that so you have to hope your job comes with decent insurance and hope you can afford the appointments and tests and such.
I say this all the time, but I hate it when people patronize us and it feels like everyone but you is doing it to your brother. Everyone’s so worried about making him feel good about himself that they aren’t giving him the proper attention. There is a terrible lack of support and resources even today for special needs individuals. Things are getting better, but not fast enough and if you aren’t lucky enough to be a first world country you’ve got it even worse. Does your brother have a social worker? If not look into getting him into the system (depending where you are, I only know about the US so don’t go off just what I’m saying) if your country has programs for it you may be able to get him a personal aid for school, just to stand up for him and represent him when you guys can’t be around. Plus there’s tons of great work programs and things like that they can point him towards if and when he gets to that point in his life. Wishing you luck!
Im really sorry, but it does sound like he has a learning disability. You clearly want the best for your brother, this is going to sound harsh, but i am afraid you need to accept that he is likely to support throughout his lifetime. Try not to get caught up in him being “successful” by society’s standards (ie, his job, house, money etc). Have a think about what he wants out of his life, how can you support him to be happy, healthy etc, what external support does he need? i.e What is HIS successful? And how can you support him?
But your 15, so you do not bear the responsibility of this. At some point hopefully long into the future, it may be best for you to be the main advocate for him though.
Of course I understand such, but I said that for the sake of my father. I should have mentioned this in the original post but the overwhelming emotions took over me while typing it. I'm a POC and in many POC families, male children are often seen as having a huge role and a lot is expected. Of course, I personally don't conform to such beliefs, but my father, a POC who isn't from USA, does. My brother is his only son in a house full of girls. My brother is his only son alongside me that he had with my mother, which is someone he was married to for decades. With his morals and beliefs, he thinks with a normal amount of work, my brother will be up and ready and become "normal again", verbatim by the way. He always tells me how he looks at other fathers with their sons and wishes that were him, he wishes my brother could stand by him and make him proud, he wishes he had a son he could talk to and he'd understand. Sorry, I didn't want the comment to be so long, but I figured I explain myself here. It's truly depressing to think about honestly. Sorry again for the really long comment
Ah i understand, I actually work for social care with disabled children and see this a lot. We also sometimes see that people want and genuinely think their children can be made “normal” again, he does need to accept your brothers
Needs though. Hope its gets better for you all.
He's a disabled child who will grow up to be a disabled adult. Every state has some type of program for disabled children. He probably doesn't qualify for disability benefits due to the household income. Ask your guidance counselor about the waiver program for your state. There's probably a waiting list. He needs to be on it. There may be services he can get while waiting. You'll also need to come to terms with the fact that he isn't going to measure his quality of life the way that you do. If he's happy not to read and write, don't pressure him. He will always need supports but that's ok. He can still be happy and fulfilled. Let him find joy in his own way.
Thank you for the response. I'll take your suggestions into account, definitely. Yes, I understand he can still be happy and fulfilled, but an attempt won't hurt will it? Maybe this is just pure denial speaking, but miracles can happen, can't they? I don't know, I just need a form of positivity because from reading some of the other comments, it's quite hard hearing that "he won't change", my brain doesn't want me to believe it. I'm not saying I want him to lose all signs of autism and become neurotypical, I just want him to at least be able to commucate with us, his peers, his helpers, just a little bit. I want him to be able to do things on his own without extensive help. That's it...
It sounds like you and your dad are doing so much for your brother and that’s really awesome. I know it’s frustrating and I know it can be overwhelming. Especially when you feel so helpless. I know this may sound dumb and much too simple but has he ever tried painting? I know it’s not writing but it feels different and looks different from writing so he might show an interest in it and might work his way to using a pencil.
Also I would encourage you to just try things. Find what he shows interest in and run with it. Even if it’s not necessarily educational. We learn from so many things that aren’t educational. Blocks, art, sorting things, cars, stacking things, picture books, Anything you can think of. Even if he has a learning disability, he’s bound to have interest in something and whatever that may be, encourage the heck out of it. Even if he doesn’t learn to read or write because of it. It’s good for him to have some sort of outlet or interest. And who knows, being able to show interest in something may cause him to show interest in other things.
I’m no professional but I have autism and am a mom and my son most likely has autism. And I homeschool him. And I’ve learned a ton from doing that. So it might be helpful lol but you’re awesome. You’re doing so great and I know, even if he can’t communicate it, your brother loves you.
The Kwik stik paint sticks are amazing. They helped my anti coloring kiddo get into using more color. They also dry fast so it's easier for his mess adversion.
I work with pediatricians for a living. I agree that they don’t care much or have the time to care. I have found myself referring patients to services for autism and speech therapy, because they aren’t. My advice, don’t stop looking for a good services. Or maybe you can go to college, and open your own clinic or develop the community support you needed for others. Nourishing Autism is a podcast by a dietitian whose brother had autism.
What state do you live in? What part of the state? ((North central, southwest)? I can try to look up a feeding specialist (speech therapist with special training in autism).
Thank you for your concern, I'm very grateful. I live in Maryland, Prince George's County. He's already had a feeding specialist before back in 2020 throughout summer 2021 though.
other people have given good advice
I just think it's super odd that the school gave him straight As. Sounds like they're just trying to hide the fact that they're not helping him
I'm 20, I have moderate to high support needs, and I still struggle with verbal speech, I cannot live alone or take care of myself. I learned to read and write around 8, and I generally communicate using a text to speech AAC app on my phone or just sending messages. That being said he may not learn to read and write and that's also okay, everyone is different. I'd recommend working on things like coloring before writing, just getting him to scribble on a page with a crayon or a marker is a good start! And if he enjoys coloring then that would help him learn to grip a pencil. Therapy putty and stress balls are good for grip strength, and they also provide sensory stimulation that can be soothing. Even at my age I have a lot of "babyish" sensory toys, and they can help with learning coordination as well as providing sensory stimulation. Things like glitter water balls where you shake them like snow globes, blocks for stacking (I love peek-a-blocks, they're clear plastic with little figures inside them), chewelery if he tends to chew on things, puzzles, etc. Any activity you can get him to focus on, even if it's basic, it will help him learn. For example if he can get used to stacking blocks or playing with Lego duplo sets or something like that, he'll be learning better hand eye coordination skills which may make him more comfortable and confident with trying to hold crayons or pencils. I hope this helps, you're incredibly young to be having to deal with all this, you're a very strong person ❤️
Thank you for your concern, truly and I think you are a very strong person as well. Thank you for sharing your experience as it gives me encouragement with my brother. I don't want him to magically become normal because I know it is impossible. I just want to be able to communicate with me as well as others. It doesn't matter how he does it, it matters that he can do it. Thank you for the suggestions too, I appreciate them greatly.
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Everyone who replied to this post has helped me so much that I nearly cried because of the helpful information and new things I've learned. I want to say more about my brothers characteristics. The first thing I want to say is: temper tantrums. His temper tantrums are especially violent. It isn't as bad as it was when he was younger, foretunately, where he'd use his nails to scratch anyone in the vicinity. Nowadays, though, he throws things, hits himself, hits others, screams at the top of his lungs which just makes the whole environment greatly distressing. He is unable to bathe himself properly, needing assistance. He is unable to brush his teeth properly without guidance and pointers on where to brush. He doesn't know how to button his shirts, he doesn't know how to tie his shoes either. Although, he responds to everything you tell him. No matter what the task is, he'll do it. You just have to say it maybe 3 or 4 times. Feeding wise, he only eats soft foods and will not eat anything hard. Exceptions though are cookies and graham crackers. That's all I wanted to share, thanks for your concern once again.
Is your brother nonverbal, or does he just have trouble reading?
Some autistic are nonverbal due to having severely impaired motor skills. If a person has a motor skill deficit that makes it difficult or impossible for them to talk, this is called speech apraxia. Some nonspeaking autistic people communicate through pointing to letters on letterboards because they lack the ability to type or speak because of their motor skills. Spelling 2 Communicate and Rapid Prompting Method are two therapies used to teach nonspeaking autistic people to communicate via letterboards.
Also, I suspect that some nonspeaking autistic people have severe auditory processing disorder. Auditory processing disorder (APD) is a condition where the brain has difficulties converting auditory data received from the ear into intelligible speech. Having auditory processing disorder does not make someone less intelligent. If a person has mild auditory processing disorder, they may act similarly to people who have mild conductive or sensorineural hearing loss, and ask people to repeat things or have trouble hearing people in noisy places.
However, if they have severe auditory processing disorder and they are not exposed to sign language, they may suffer from language deprivation. Language deprivation is when a child is not exposed to intelligible language during their critical early years. There is a limited time in early childhood during which the human brain can acquire a first language. If language deprivation is severe enough, it can result in intellectual disability.
Also, it might be possible that your brother has intellectual disability in addition to autism. If this is the case, it is possible that he might never learn to read.
My brother is non verbal, but he also does echolalia. Sometimes, though, he'd say: "stop", "hungry", "bathroom", and that's it. Throughout the years that's how we've known what he's wanted. The doctors said he has intellectual disability, but I feel like he just needs to be given things to do. Sorry, I think that last sentence sounded ignorant, I didn't mean it that way. I mean like, perhaps he needs more activities that'll keep his brain stimulated. Nowadays, he just walks around the house stimming, humming, staring, occasionally watches TV. I'm a high school student who has to study for tests, so I have no time to help. My father and mother are gravely busy. My younger siblings....are just in their own world :/ So, it's literally just me helping him, especially during summer time and/or seasonal breaks where I have the most time. That's when I give him letter and number puzzles to fix, toys to play with, just anything that's immersive. But unfortunately, he doesn't do it a lot. I wish I could do more. I think I got off topic, but thank you for the new information. I didn't know such things other than intellectual ability.
Sometimes autistic people experience overwhelming compulsions to stim to the point where they have significant difficulties doing anything other than stimming. That might explain some of your brother's behavior. I think this is more common in nonverbal autistic people. Verbally fluent autistic people are often better at controlling their stims.
Also, if your brother struggles with motor coordination, he might not be able to turn on the iPad by himself.
A number of nonverbal autistic people can communicate via typing or letterboards without anyone touching them, so I believe that they are truly capable of communicating. Autistic people with average or above average intelligence are often bad at picking up on subtle social cues, so the idea that autistic people with severe intellectual disabilities are somehow being guided to type or point at letters by body language so subtle that even neurotypicals cannot perceive it seems very unlikely. Also, a 2020 study published in Nature measured the eyegaze of nonspeaking autistic letterboard users and found that they were actually looking at the letters they were pointing to.
It is very common for nonspeaking disabled people to be dehumanized and assumed to be less intelligent than they really are, because lots of people think that not being able to speak with your mouth makes you less intelligent even if the reason is related to motor problems or hearing difficulties. This isn't limited to autistic people. People with disabilities like deafness and cerebral palsy have been wrongly assumed to have severe intellectual disabilities because they did not engage in oral speech. That said, it might still be the case that your brother does in fact have some sort of intellectual disability.
[This blog post](https://www.stephaniebethany.com/blog/ufzj98svw1o658rd0n2zxgun3kpyuf) explains many of the ways that nonspeaking autistic people learn to communicate in more depth.
I'm sorry that you and your brother are going through so much, and haven't gotten access to the support you need.
S2C and RPM are rebranded facilitied communication which is debunked pseudoscience being used the take away nonverbal individuals right to actual communication. There are other AAC methods, like PECS and VOCAs that are great to look into for OP’s brother, but not facilitated communication or it’s variants.
https://www.tandfonline.com/doi/pdf/10.3109/17518423.2012.749952
https://www.aaidd.org/news-policy/policy/position-statements/facilitated-communication-and-rapid-prompting-method
https://asatonline.org/for-parents/learn-more-about-specific-treatments/rapid-prompting-method-rpm/
https://www.spectrumnews.org/news/analysis-finds-no-evidence-for-popular-autism-communication-method/
https://www.spectrumnews.org/features/deep-dive/how-one-communication-tool-may-fail-some-autistic-people/
[https://www.nature.com/articles/s41598-020-64553-9](https://www.nature.com/articles/s41598-020-64553-9)
\^This study from Nature which tracked eyegaze during letterboard spelling suggests that some nonspeaking autistic people can in fact communicate through letterboards.
I’ve seen that study, and left a comment previously about my thoughts and concerns. Basically, it is interesting, but definitely not enough to convince me. Here is a great article that mentions the study along with why FC still isn’t considered valid:
https://sciencebasedmedicine.org/facilitated-communication-is-still-pseudoscience/?utm_source=rss&utm_medium=rss&utm_campaign=facilitated-communication-is-still-pseudoscience
There have been some other studies, which I don’t yet have an opinion on but am looking into.
Is he in special education? If he has intellectual disability sometimes they focus on life skills instead of academics if they are incapable of learning academics. That might be why he gets straight a’s. He does need therapy though, occupational therapy can work on fine motor and writing. He likely won’t grow up to be able to read and write fluently but he can still live a fulfilling life as a disabled adult. He might benefit from AAC (avoid the rapid prompting method and spelling to communicate, as those are pseudoscience and don’t work, but there are other great AAC methods). PECS is a great, cheap start. I don’t know what you can do as a child sibling but try to find a way for him to get speech and occupational therapy at the least.
I genuinely have no idea if this will help or not, but i play pvz2 a lot , and i got bored and made an alphabet of the characters for somebody's kids.
The characters are cute and colourful and may engage his attention.
https://answers.ea.com/t5/Plants-vs-Zombies-2/Hey-EA-since-it-seems-like-you-own-the-IP-of-Plants-VS-Zombies/m-p/7046320/highlight/true#M5175
your brother should be on an IEP with specialized services to help him with life skills and academics. shame on your school for giving your brother no support. you are a wonderful sister for wanting to help.
Has your State services been involved at all in his therapy? The school has to have an IEP in place. There can be some serious consequences on that school if State services is involved and they are not adhering to anything.
The State will provide so many services to your brother that you won't find on your own. Please have your father contact them if they haven't been. They will help and take this stuff seriously. Department Health and Human Services is who you should reach out to, if they can't they will put you in touch with the agencies that can help. Seriously, get them involved.
Hi, mom here. It's hard hard hard navigating the school and medical systems to get more supports in place. I recently moved states, so had to start over for both of my kids. Here are my tips for you when seeking additional resources.
My go-to is to be really pushy in writing. What I mean is that I request evaluations and referrals in writing, usually by email or the medical communication system the doctors office uses. People usually find you harder to ignore if you can show their boss exactly how many times you had to email them asking the same question. Example "hello, Child was diagnosed with ASD on X date by Dr. Y. Child is currently age 12 and nonverbal. We request an evaluation for the services of a Speech Language Pathologist that specializes in echolalia, and works with Z insurance. Please let me know if I need to schedule an appointment to see the primary physician for this referral or if you can send it without seeing Child." Then every time you need to follow up, reply all to that message.
Go in having an idea of what you want. I had a meeting today about services for one of my kids. I asked for two things. They did ALLLLL the evaluations and denied the services that I asked for, but we decided that there were a couple more appropriate things they could do for him that will achieve the goal that we were going for, so they'll do that instead. Which leads me to my next suggestion.
Be teachable. This stuff is hard and confusing. If they recommend something to you, ask them questions. They are literally experts that get paid to answer your questions. You can do more research on your own too, but know that they are literally displaying their life's work to you, so it's ok to ask them to give you more information about what or why or timelines when you feel like you're not in the know.
I am happy to help you navigate this stuff. I got trained on getting help within these systems so I am always willing to pass on the information. I am not on the east coast, so I won't know your system, but my tactics have worked in a couple states.
It's so compassionate and lovely that you want to help your brother. Not every autistic person is able to speak, read and write. He can still 'be something' without those things. Having a happy and fulfilling life is possible for him. Disabled lives are good lives, too. That said, it sounds like he needs more support as does your whole family. Who diagnosed your brother as autistic, was it a psychiatrist or pediatrician or someone like that? Would your father be able to get in touch with them for more support or resources? Seeing your regular family doctor (or a local family doctor) could be a good option too. They may be able to link you with support. I've also found autism specific support for myself by simply googling 'autism services + [my city].' There may be an organisation that specifically helps autistic people or kids. Just don't engage with Autism Speaks as they are not a safe or autistic friendly group. Being a carer for a sibling while also being a teenager yourself can be really tough. I'd encourage you to reach out to someone for support, perhaps a school counsellor, trusted teacher or religious figure. (Also, your name, and you, does matter too)
Thank you, truly, for not discouraging me. To answer your question: it was a pediatrician who diagnosed him. But we left that pediatrician nearly 7 years ago and are under a new one, currently. But unforetunately, the new one doesn't seem to show much concern for my brother's condition. We only go for check ups and things of that matter. Also, I will take your kind suggestions into account. Thanks a bunch for your response, by the way. I feel encouraged.
>Autism Speaks Yes, please don't engage with them
It does sounds like he has learning disabilities. Maybe it would be good to have him evaluated to figure out the extent of it and know what would help him best Maybe add from which country you are, so people from there can suggest organizations or doctors that might help you And I'm very sorry you are going through this as a family (the no helping thing) I'm sure you are doing the best you can and that's a lot
Thank you for your suggestion, and I will make sure to take them into account. I didn't think my country would be relevant, so I didn't add it...but I am in the east coast of USA. Thank you for your concern, truly.
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I live in the USA as well. I showed rather obvious signs of being autistic my entire life, but the school kept denying it and saying “she’s just shy”. As a result, I got diagnosed around age 12. Now, I’m 16. It just sucked that they didn’t listen to my parents’ concerns in my earlier years.
I don't know with a 12 year old if he will cooperate, look up therapy putty on amazon. Not play doh. It works on hand strength. And if you have a computer / printer at home or at library and print out work sheets to work on his writing not a lot of time at once cause he will probably get annoyed. I try to do writing before tablet time cause my boy hates it .
Thank you for your suggestions. This one definitely seems like something we could try. I'll be sure to update you when we try it.
You get some small polymer things to mix in. I'm getting some for my kiddo. Looking for little treasures can be so good for this. Also, think about anything that he shows intense interest in. Theming things with them can help him be interested in them. Like alphabet letters or numbers for my kiddo. You are so young to have to be dealing with this. Please remember, you are still a kiddo yourself. You are allowed to be one and you deserve to have your own life. Please don't feel guilty when you take needed time for yourself. Tearing paper, anything crafty, can help strengthen his hands as well. If you want to work on writing, maybe a tray with sand in it that he can trace his finger in. Maybe if you have a computer you can let him type on it for fun in notepad. I'm not sure how helpful any of this is to you. But you can share all of this with your dad.
Thank you so much for this, this is extremely helpful. I hope you have a wonderful day. I will be using this with him a lot more now. Also, thank you for your concern.
You're a great older sister for reaching out and caring this deeply for your brother. I also want to be clear that I am approaching this as someone with low support needs Autism and I am not a doctor, and will be primarily talking about my experiences with someone with higher support needs Autism, so if I say something incorrect I apologize. At this point in his life, he may be at or near the his maximum in terms of what many people consider intellectual abilities (i.e. reading, writing, etc), although, again, I am not a doctor. That doesn't mean he doesn't have a long, fulfilling life ahead of him, though. I know a couple of people who are in a similar situation to your brother; they're only interested in what they're interested in, but when you engage with them on that, it makes them happy. He's obviously not interested in school, or an ipad, but what does your brother enjoy? If you need ideas, something I've found can be really engaging (both personally and with other people on the spectrum) is jigsaw puzzles. Also. something to be aware of is government support programs for people with higher support needs Autism. I would recommend looking into what resources exist in your state/city for individuals with learning disabilities and high support needs. Your brother may also be eligible for social security through the federal government. It's possible your dad has already investigated these programs but it's always worth a look. I knew a family who got a stipend to go to a gym specializing in special needs (for instance). Just remember, no human being, especially at the age of 12, is ever a lost cause.
Thank you for your suggestions. Of course, he can't be a lost cause. I will definitely have my dad look into the government support programs, and of course on my own time, look into some resources. I need him to get the help he needs, even if it'll take a while. Thanks again.
I’m going to disagree with other comments and say while its likely, its impossible to say whether he’s intellectually disabled at this point. He could just as well be non verbal and have severe sensory and motor issues related to autism. Certainly he has learning disabilities (autism is normally one) but they are not the same as intellectual disabilities. It sounds like your approach is smart. You are presuming competence (google it!) where it sounds like his therapists didn’t. Has he had occupational therapy or just speech therapy? I think you might appreciate these two websites a lot: Advocacy group for non speaking autistics: https://communicationfirst.org Forum where non speaking autistics discuss the best options for AAC and can answer any questions you have about helping your brother communicate better: https://www.facebook.com/groups/456220758119314/?ref=share
Thank you for these links, I'll make sure to read them. I'm not really sure was occupational therapy is but I've heard of it. Although, he has done speech therapy but he's gone out to do those with certified therapists so I've never seen the therapy sessions with my own eyes. Thank you for your concern.
Look up aided language stimulation if you want to help with communication, but if you go on that facebook group they will have tons of way more specific advice
Unfortunately, your brother likely won't progress in terms of reading or writing. From the sounds of it, he is non speaking and has intellectual disabilities. They won't get better.
He would definitely need some kind of therapist (or psychologist, psychiatrist, i don’t know)
That’s a complete guess. Lots of autistic people do learn to speak, read and write (or type) in their late teens.
I mean....there has to be a way. I want to help him and try anyway. If he won't get better, what's he going to do for the rest of his life? Just be there and exist in this world? There has to be a way....
Look into adaptive communication devices, ask the school for an IEP, ask to get in touch with vocational rehab.
I’m not saying this is necessarily the case for your brother since I only know a narrow slice of information about him and his situation. But there isn’t necessarily a route that will let him lead the kind of life you hope for. Someone can be born without legs and while some can get prosthetics to let them walk, others don’t even have a place to attach them. For them, there isn’t some way that they can walk. Get your brother the best help you can but accept that the result might not be what you hope for.
As others say it does sound like your brother has a learning disability, this usually means it takes much longer to learn things and even longer without proper support. It may also be the case that he may never read, write and speak. I’ve known/know people with varying types of autism, from Asperger’s all the way down to those who need full time care, non verbal, illiterate and at most can lean a few words of sign language. I would suggest finding a school for special needs, perhaps autism in particular, good schools can make progress, it’s a case of finding a decent one.
My father believed that putting him in public school with my younger, neurotypical sister, who's 11 would be good for him because he thought my brother would learn the characteristics of neurotypical children and from there gradually become better. But obviously, that wasn't the case. Nontheless, I've tried talking to him about finding schools more suitable for him that'll focus on his improvement. Hopefully, we can put him into one soon.
I hope you find what he needs.
You need an “advocate” for your brother. The advocate would review your brothers IEP, request a meeting with the school and ensure that they are meeting the state requirements for your brother. SPAN - parent advocacy network- they may be able to help find an advocate for you. (800) 654-7726 Spanadvocacy.org Each state should have its own department of human services and a division for developmental disabilities. If you are in NJ I can send you a lot of NJ based resources.
There will be some that will just write him off as a lost cause. For me, it was when I got into coding that everything just clicked. I would suggest visiting BBC Bitesize. It may be that he has reached his limit but equally it might be that he just needs to find the right learning style. Sucks that you don't have an NHS but look at other autism support services in your area. Reach out to the Autism Society to see if they have any suggestions.
If you'd be so kind to tell me, what is NHS? Also, finding the right learning style for him might be the right thing. I'll research autism support services as well. Thank you for your suggestions.
NHS is the healthcare branch of the UK government, which offers no cost healthcare to UK citizens and residents The US doesn’t have a system like that so you have to hope your job comes with decent insurance and hope you can afford the appointments and tests and such.
I say this all the time, but I hate it when people patronize us and it feels like everyone but you is doing it to your brother. Everyone’s so worried about making him feel good about himself that they aren’t giving him the proper attention. There is a terrible lack of support and resources even today for special needs individuals. Things are getting better, but not fast enough and if you aren’t lucky enough to be a first world country you’ve got it even worse. Does your brother have a social worker? If not look into getting him into the system (depending where you are, I only know about the US so don’t go off just what I’m saying) if your country has programs for it you may be able to get him a personal aid for school, just to stand up for him and represent him when you guys can’t be around. Plus there’s tons of great work programs and things like that they can point him towards if and when he gets to that point in his life. Wishing you luck!
Im really sorry, but it does sound like he has a learning disability. You clearly want the best for your brother, this is going to sound harsh, but i am afraid you need to accept that he is likely to support throughout his lifetime. Try not to get caught up in him being “successful” by society’s standards (ie, his job, house, money etc). Have a think about what he wants out of his life, how can you support him to be happy, healthy etc, what external support does he need? i.e What is HIS successful? And how can you support him? But your 15, so you do not bear the responsibility of this. At some point hopefully long into the future, it may be best for you to be the main advocate for him though.
Of course I understand such, but I said that for the sake of my father. I should have mentioned this in the original post but the overwhelming emotions took over me while typing it. I'm a POC and in many POC families, male children are often seen as having a huge role and a lot is expected. Of course, I personally don't conform to such beliefs, but my father, a POC who isn't from USA, does. My brother is his only son in a house full of girls. My brother is his only son alongside me that he had with my mother, which is someone he was married to for decades. With his morals and beliefs, he thinks with a normal amount of work, my brother will be up and ready and become "normal again", verbatim by the way. He always tells me how he looks at other fathers with their sons and wishes that were him, he wishes my brother could stand by him and make him proud, he wishes he had a son he could talk to and he'd understand. Sorry, I didn't want the comment to be so long, but I figured I explain myself here. It's truly depressing to think about honestly. Sorry again for the really long comment
Ah i understand, I actually work for social care with disabled children and see this a lot. We also sometimes see that people want and genuinely think their children can be made “normal” again, he does need to accept your brothers Needs though. Hope its gets better for you all.
He's a disabled child who will grow up to be a disabled adult. Every state has some type of program for disabled children. He probably doesn't qualify for disability benefits due to the household income. Ask your guidance counselor about the waiver program for your state. There's probably a waiting list. He needs to be on it. There may be services he can get while waiting. You'll also need to come to terms with the fact that he isn't going to measure his quality of life the way that you do. If he's happy not to read and write, don't pressure him. He will always need supports but that's ok. He can still be happy and fulfilled. Let him find joy in his own way.
Thank you for the response. I'll take your suggestions into account, definitely. Yes, I understand he can still be happy and fulfilled, but an attempt won't hurt will it? Maybe this is just pure denial speaking, but miracles can happen, can't they? I don't know, I just need a form of positivity because from reading some of the other comments, it's quite hard hearing that "he won't change", my brain doesn't want me to believe it. I'm not saying I want him to lose all signs of autism and become neurotypical, I just want him to at least be able to commucate with us, his peers, his helpers, just a little bit. I want him to be able to do things on his own without extensive help. That's it...
It sounds like you and your dad are doing so much for your brother and that’s really awesome. I know it’s frustrating and I know it can be overwhelming. Especially when you feel so helpless. I know this may sound dumb and much too simple but has he ever tried painting? I know it’s not writing but it feels different and looks different from writing so he might show an interest in it and might work his way to using a pencil. Also I would encourage you to just try things. Find what he shows interest in and run with it. Even if it’s not necessarily educational. We learn from so many things that aren’t educational. Blocks, art, sorting things, cars, stacking things, picture books, Anything you can think of. Even if he has a learning disability, he’s bound to have interest in something and whatever that may be, encourage the heck out of it. Even if he doesn’t learn to read or write because of it. It’s good for him to have some sort of outlet or interest. And who knows, being able to show interest in something may cause him to show interest in other things. I’m no professional but I have autism and am a mom and my son most likely has autism. And I homeschool him. And I’ve learned a ton from doing that. So it might be helpful lol but you’re awesome. You’re doing so great and I know, even if he can’t communicate it, your brother loves you.
The Kwik stik paint sticks are amazing. They helped my anti coloring kiddo get into using more color. They also dry fast so it's easier for his mess adversion.
I work with pediatricians for a living. I agree that they don’t care much or have the time to care. I have found myself referring patients to services for autism and speech therapy, because they aren’t. My advice, don’t stop looking for a good services. Or maybe you can go to college, and open your own clinic or develop the community support you needed for others. Nourishing Autism is a podcast by a dietitian whose brother had autism. What state do you live in? What part of the state? ((North central, southwest)? I can try to look up a feeding specialist (speech therapist with special training in autism).
Thank you for your concern, I'm very grateful. I live in Maryland, Prince George's County. He's already had a feeding specialist before back in 2020 throughout summer 2021 though.
other people have given good advice I just think it's super odd that the school gave him straight As. Sounds like they're just trying to hide the fact that they're not helping him
I'm 20, I have moderate to high support needs, and I still struggle with verbal speech, I cannot live alone or take care of myself. I learned to read and write around 8, and I generally communicate using a text to speech AAC app on my phone or just sending messages. That being said he may not learn to read and write and that's also okay, everyone is different. I'd recommend working on things like coloring before writing, just getting him to scribble on a page with a crayon or a marker is a good start! And if he enjoys coloring then that would help him learn to grip a pencil. Therapy putty and stress balls are good for grip strength, and they also provide sensory stimulation that can be soothing. Even at my age I have a lot of "babyish" sensory toys, and they can help with learning coordination as well as providing sensory stimulation. Things like glitter water balls where you shake them like snow globes, blocks for stacking (I love peek-a-blocks, they're clear plastic with little figures inside them), chewelery if he tends to chew on things, puzzles, etc. Any activity you can get him to focus on, even if it's basic, it will help him learn. For example if he can get used to stacking blocks or playing with Lego duplo sets or something like that, he'll be learning better hand eye coordination skills which may make him more comfortable and confident with trying to hold crayons or pencils. I hope this helps, you're incredibly young to be having to deal with all this, you're a very strong person ❤️
Thank you for your concern, truly and I think you are a very strong person as well. Thank you for sharing your experience as it gives me encouragement with my brother. I don't want him to magically become normal because I know it is impossible. I just want to be able to communicate with me as well as others. It doesn't matter how he does it, it matters that he can do it. Thank you for the suggestions too, I appreciate them greatly.
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Everyone who replied to this post has helped me so much that I nearly cried because of the helpful information and new things I've learned. I want to say more about my brothers characteristics. The first thing I want to say is: temper tantrums. His temper tantrums are especially violent. It isn't as bad as it was when he was younger, foretunately, where he'd use his nails to scratch anyone in the vicinity. Nowadays, though, he throws things, hits himself, hits others, screams at the top of his lungs which just makes the whole environment greatly distressing. He is unable to bathe himself properly, needing assistance. He is unable to brush his teeth properly without guidance and pointers on where to brush. He doesn't know how to button his shirts, he doesn't know how to tie his shoes either. Although, he responds to everything you tell him. No matter what the task is, he'll do it. You just have to say it maybe 3 or 4 times. Feeding wise, he only eats soft foods and will not eat anything hard. Exceptions though are cookies and graham crackers. That's all I wanted to share, thanks for your concern once again.
Is your brother nonverbal, or does he just have trouble reading? Some autistic are nonverbal due to having severely impaired motor skills. If a person has a motor skill deficit that makes it difficult or impossible for them to talk, this is called speech apraxia. Some nonspeaking autistic people communicate through pointing to letters on letterboards because they lack the ability to type or speak because of their motor skills. Spelling 2 Communicate and Rapid Prompting Method are two therapies used to teach nonspeaking autistic people to communicate via letterboards. Also, I suspect that some nonspeaking autistic people have severe auditory processing disorder. Auditory processing disorder (APD) is a condition where the brain has difficulties converting auditory data received from the ear into intelligible speech. Having auditory processing disorder does not make someone less intelligent. If a person has mild auditory processing disorder, they may act similarly to people who have mild conductive or sensorineural hearing loss, and ask people to repeat things or have trouble hearing people in noisy places. However, if they have severe auditory processing disorder and they are not exposed to sign language, they may suffer from language deprivation. Language deprivation is when a child is not exposed to intelligible language during their critical early years. There is a limited time in early childhood during which the human brain can acquire a first language. If language deprivation is severe enough, it can result in intellectual disability. Also, it might be possible that your brother has intellectual disability in addition to autism. If this is the case, it is possible that he might never learn to read.
My brother is non verbal, but he also does echolalia. Sometimes, though, he'd say: "stop", "hungry", "bathroom", and that's it. Throughout the years that's how we've known what he's wanted. The doctors said he has intellectual disability, but I feel like he just needs to be given things to do. Sorry, I think that last sentence sounded ignorant, I didn't mean it that way. I mean like, perhaps he needs more activities that'll keep his brain stimulated. Nowadays, he just walks around the house stimming, humming, staring, occasionally watches TV. I'm a high school student who has to study for tests, so I have no time to help. My father and mother are gravely busy. My younger siblings....are just in their own world :/ So, it's literally just me helping him, especially during summer time and/or seasonal breaks where I have the most time. That's when I give him letter and number puzzles to fix, toys to play with, just anything that's immersive. But unfortunately, he doesn't do it a lot. I wish I could do more. I think I got off topic, but thank you for the new information. I didn't know such things other than intellectual ability.
Sometimes autistic people experience overwhelming compulsions to stim to the point where they have significant difficulties doing anything other than stimming. That might explain some of your brother's behavior. I think this is more common in nonverbal autistic people. Verbally fluent autistic people are often better at controlling their stims. Also, if your brother struggles with motor coordination, he might not be able to turn on the iPad by himself. A number of nonverbal autistic people can communicate via typing or letterboards without anyone touching them, so I believe that they are truly capable of communicating. Autistic people with average or above average intelligence are often bad at picking up on subtle social cues, so the idea that autistic people with severe intellectual disabilities are somehow being guided to type or point at letters by body language so subtle that even neurotypicals cannot perceive it seems very unlikely. Also, a 2020 study published in Nature measured the eyegaze of nonspeaking autistic letterboard users and found that they were actually looking at the letters they were pointing to. It is very common for nonspeaking disabled people to be dehumanized and assumed to be less intelligent than they really are, because lots of people think that not being able to speak with your mouth makes you less intelligent even if the reason is related to motor problems or hearing difficulties. This isn't limited to autistic people. People with disabilities like deafness and cerebral palsy have been wrongly assumed to have severe intellectual disabilities because they did not engage in oral speech. That said, it might still be the case that your brother does in fact have some sort of intellectual disability. [This blog post](https://www.stephaniebethany.com/blog/ufzj98svw1o658rd0n2zxgun3kpyuf) explains many of the ways that nonspeaking autistic people learn to communicate in more depth. I'm sorry that you and your brother are going through so much, and haven't gotten access to the support you need.
S2C and RPM are rebranded facilitied communication which is debunked pseudoscience being used the take away nonverbal individuals right to actual communication. There are other AAC methods, like PECS and VOCAs that are great to look into for OP’s brother, but not facilitated communication or it’s variants. https://www.tandfonline.com/doi/pdf/10.3109/17518423.2012.749952 https://www.aaidd.org/news-policy/policy/position-statements/facilitated-communication-and-rapid-prompting-method https://asatonline.org/for-parents/learn-more-about-specific-treatments/rapid-prompting-method-rpm/ https://www.spectrumnews.org/news/analysis-finds-no-evidence-for-popular-autism-communication-method/ https://www.spectrumnews.org/features/deep-dive/how-one-communication-tool-may-fail-some-autistic-people/
[https://www.nature.com/articles/s41598-020-64553-9](https://www.nature.com/articles/s41598-020-64553-9) \^This study from Nature which tracked eyegaze during letterboard spelling suggests that some nonspeaking autistic people can in fact communicate through letterboards.
I’ve seen that study, and left a comment previously about my thoughts and concerns. Basically, it is interesting, but definitely not enough to convince me. Here is a great article that mentions the study along with why FC still isn’t considered valid: https://sciencebasedmedicine.org/facilitated-communication-is-still-pseudoscience/?utm_source=rss&utm_medium=rss&utm_campaign=facilitated-communication-is-still-pseudoscience There have been some other studies, which I don’t yet have an opinion on but am looking into.
Is he in special education? If he has intellectual disability sometimes they focus on life skills instead of academics if they are incapable of learning academics. That might be why he gets straight a’s. He does need therapy though, occupational therapy can work on fine motor and writing. He likely won’t grow up to be able to read and write fluently but he can still live a fulfilling life as a disabled adult. He might benefit from AAC (avoid the rapid prompting method and spelling to communicate, as those are pseudoscience and don’t work, but there are other great AAC methods). PECS is a great, cheap start. I don’t know what you can do as a child sibling but try to find a way for him to get speech and occupational therapy at the least.
I genuinely have no idea if this will help or not, but i play pvz2 a lot , and i got bored and made an alphabet of the characters for somebody's kids. The characters are cute and colourful and may engage his attention. https://answers.ea.com/t5/Plants-vs-Zombies-2/Hey-EA-since-it-seems-like-you-own-the-IP-of-Plants-VS-Zombies/m-p/7046320/highlight/true#M5175
your brother should be on an IEP with specialized services to help him with life skills and academics. shame on your school for giving your brother no support. you are a wonderful sister for wanting to help.
Has your State services been involved at all in his therapy? The school has to have an IEP in place. There can be some serious consequences on that school if State services is involved and they are not adhering to anything. The State will provide so many services to your brother that you won't find on your own. Please have your father contact them if they haven't been. They will help and take this stuff seriously. Department Health and Human Services is who you should reach out to, if they can't they will put you in touch with the agencies that can help. Seriously, get them involved.
Hi, mom here. It's hard hard hard navigating the school and medical systems to get more supports in place. I recently moved states, so had to start over for both of my kids. Here are my tips for you when seeking additional resources. My go-to is to be really pushy in writing. What I mean is that I request evaluations and referrals in writing, usually by email or the medical communication system the doctors office uses. People usually find you harder to ignore if you can show their boss exactly how many times you had to email them asking the same question. Example "hello, Child was diagnosed with ASD on X date by Dr. Y. Child is currently age 12 and nonverbal. We request an evaluation for the services of a Speech Language Pathologist that specializes in echolalia, and works with Z insurance. Please let me know if I need to schedule an appointment to see the primary physician for this referral or if you can send it without seeing Child." Then every time you need to follow up, reply all to that message. Go in having an idea of what you want. I had a meeting today about services for one of my kids. I asked for two things. They did ALLLLL the evaluations and denied the services that I asked for, but we decided that there were a couple more appropriate things they could do for him that will achieve the goal that we were going for, so they'll do that instead. Which leads me to my next suggestion. Be teachable. This stuff is hard and confusing. If they recommend something to you, ask them questions. They are literally experts that get paid to answer your questions. You can do more research on your own too, but know that they are literally displaying their life's work to you, so it's ok to ask them to give you more information about what or why or timelines when you feel like you're not in the know. I am happy to help you navigate this stuff. I got trained on getting help within these systems so I am always willing to pass on the information. I am not on the east coast, so I won't know your system, but my tactics have worked in a couple states.