Nurturing An ASD Child: Do's And Don'ts.

Teach51Teach51 Citizen
edited January 17 in General ASD

My 8yr old grandson has recently been diagnosed with ASD. My son, his father, is an amazing father and has always given my grandson unconditional love and has never tried to mould him into any text book definition of what is considered correct, normative development. My son has severe ADHD and life has been a struggle for him but I always took his side against the educational system that didn't know how to deal with his ADHD,except when his impulsivity led him to illegal activities as a teenager and I took a very strong approach to get him back on the straight and narrow. OCD and impulsivity are a serious challenge for him and will be all his life. He is an unusual, talented, hardworking and good-hearted young man. When my son's second boy was born the developmental disparity became very acutely obvious and the little one surpassed his elder brother in verbal expression and emotional stability very quickly. My eldest grandson soon developed a strong admiration for his younger brother and though the roles are somewhat reversed they have a wonderful relationship.
Elder grandson has received a scholarship to a Rudolph Steiner school and has his own personal assistant, and seems content though he is cognitively very slow to pick things up when compared with his peers and even his younger brother, though comparison is not an accurate indication of anything in my view but he is in the educational system and that is how it works.

What would you suggest that could help an autistic child be happy in his formative years from personal experience? What has failed? What has done damage?
My grandson has selective mutism and thank goodness we have always respected this need and never tried to force him to speak , and though we were baffled by his meltdowns and what triggered them pre-diagnosis , my son always just comforted him through them with much more patience than I have in such situations. Having an official diagnosis has helped a great deal to find support for my grandson.
Looking back on your own childhoods, what worked and what hindered?

Comments

  • Statest16Statest16 Citizen, Mentor
    edited January 17

    Congratulations on being Sabta,very impressive indeed.My dad actually had 10 great-grandchildren.

    The Waldorf school has a good reputation which is what I think you mean by the Rudolph Steiner school.
    I never had kids and I have no clue about kids,can't help much with that but the Waldorf school is a good start.I actually had a teacher as a kid who was a great proponent of Steiner and his methods.

  • Teach51Teach51 Citizen
    edited January 17

    Thanks Statest
    What helped you flourish in your parents parenting that enabled you to be happy in your family and have the self- confidence to write music, accept yourself? Anything you would have liked to be different that would have helped you? Assuming and hoping that you are happy of course. For me parenting 3 ADHD children with my own ADD limitations was very challenging and I did not always make the correct decisions.

  • Statest16Statest16 Citizen, Mentor
    edited January 17

    @Teach51 said:
    Thanks Statest
    What helped you flourish in your parents parenting that enabled you to be happy in your family and have the self- confidence to write music, accept yourself Statest? Anything you would have liked to be different that would have helped you? Assuming and hoping that you are happy of course. For me parenting 3 ADHD children with my own ADD limitations was very challenging and I did not always make the correct decisions.

    I went to special needs schools in childhood and things didn't go real well,as a young adult I did reading and studying music to try to better myself but did to much drinking.I really wish I had some great life advice,other than the Waldorf school being a good start,I don't know.If your grandchild is in special ed make sure the teachers are aware of his learning style.

  • You and your son already have some good instincts regarding raising your grandson.

    I applaud your ability to not pressure him to speak verbally. I have personally seen children subjected to constant badgering to get them to vocalize instead of using sign. Also you can accept short answers, such as yes or no and/or a nod of the head, rather than trying to force him to talk.

    If his manual dexterity is not limited, you could teach him to sign. I have seen that work well. You and your son would also have to learn to sign, but it is not that difficult if you do it regularly.

    The other suggestion I have for communication is an Apple app called Prolog 2 Go. Youngsters who have already been raised with tablets or ipads are usually quick and eager to pick up new software "games." This software enables a child to choose his sentences from pictures and then the software "says" the sentence out loud. This does work better when the parents have not previously subjected their children to methods to force the child to speak.

    I'm not saying that efforts to foster some kind of communication should be banned. Just not forced.

    I had no interventions as a child due to no one knowing about autism in females. There were not even special ed programs when I was growing up. So the above is based on my experience in working with families with children and/or adults who have autism.

  • Teach51Teach51 Citizen
    edited January 17

    Yes, thanks Statest. I am not a great fan of the educational system, it's a worry. @blazingstar said:

    You and your son already have some good instincts regarding raising your grandson.

    I applaud your ability to not pressure him to speak verbally. I have personally seen children subjected to constant badgering to get them to vocalize instead of using sign. Also you can accept short answers, such as yes or no and/or a nod of the head, rather than trying to force him to talk.

    If his manual dexterity is not limited, you could teach him to sign. I have seen that work well. You and your son would also have to learn to sign, but it is not that difficult if you do it regularly.

    The other suggestion I have for communication is an Apple app called Prolog 2 Go. Youngsters who have already been raised with tablets or ipads are usually quick and eager to pick up new software "games." This software enables a child to choose his sentences from pictures and then the software "says" the sentence out loud. This does work better when the parents have not previously subjected their children to methods to force the child to speak.

    I'm not saying that efforts to foster some kind of communication should be banned. Just not forced.

    I had no interventions as a child due to no one knowing about autism in females. There were not even special ed programs when I was growing up. So the above is based on my experience in working with families with children and/or adults who have autism.

    Thank you for sharing that hard-earned experience with us blaze.You have had to depend a lot on yourself, that must have been very difficult. You are very courageous, the families you support are very lucky to have you.

  • MagnaMagna Citizen

    I was undiagnosed as a child, but my Mom, a very intelligent woman, was very in tune to what I needed and what she thought would be best for me to develop well. The first example was in pre-school in the early 1970s. At the end of the very first day I was dropped off there, the teacher told my Mom that I wanted to spend the whole time by myself playing with blocks and toys and I had zero interest in the other kids. The teacher said she was concerned because I protested strongly when the teacher tried to insist that I join the other kids in group play. My Mom told the teacher that she did NOT want me to be forced to play in any way that I didn't want to play.

    Back then there was no internet and there were no video games so I played outside most of the time, built things or did crafts.

    The best thing my Mom did for me at that age was to make sure my home environment was a place where I could be myself. It was my retreat from the conformity that was forced in school. I abhor the fact that with a lot of autistic kids these days that are in ABA that the ABA therapy is carried over into the home forcing kids to conform to ABA. They have no place to truly be themselves.

    She did employ corporal punishment which I'm not in favor of, but those were different times. She told me later in life that often she'd have to give me an "after school spanking" when I returned home from school to "reset my clock". I don't hold it against her. Even though I don't think it was the correct approach, I now know that being figuratively constrained all day at school, bottling up all of my desire to do anything but sit in a confining chair under fluorescent lights with no way to filter all the sounds, I was coming home and having mini-meltdowns as a way to "blow off steam". It might have been better to give me a healthy snack immediately upon returning home and have me go outside and play vigorously by myself or something.

    Other things that she taught me that were very important were good manners. She would tell me why saying or doing certain things were not polite or were against the rules of social norms. One of her mantras was: "If you don't have anything nice to say, don't say anything at all." which has stuck with me because often in social situations I remain quite silent. Sad in a way, but by being silent I have less chance of offending. If I had no filter, be assured that I would offend (not intentionally).

    I would recommend watching anything on Youtube with Dr. Temple Grandin. I agree with everything she says about raising autistic children, especially the need for them to develop a strong work ethic. Kids in general glued to video games and screens will be a contributing factor to the downfall of society (no sense of community and no sense of the obligation we all have to be respectful of each other rather than aligning/forcing toward a single ideology).

  • IsabellaIsabella Citizen
    edited January 17

    Your grandchild is blessed to have supportive parents and grandparents helping to address his needs. My maternal grandparents were in California and my paternal grandfather vanished for eight years following a severe bout of social anxiety or reclusive behaviour. I thought he had died. When he did return, he killed himself. (Wow, I'm rambling - sorry). My point is that I didn't have the warmth or affection of regular contact with grandparents, or people advocating in my best interest. Your grandson is ten steps ahead already, just having your support and that of his parents.

    As a child I didn't have any special accommodations or supports from my parents or school, apart from speech therapy for selective mutism and pronunciation. My teachers' anecdotal comments all show evidence of my Autism and ADHD but there was no understanding of these conditions in the 70s, because I didn't have a learning disability. I lived in my head and spent a majority of my time reading, and therefore my parents left me alone most of the time, assuming I was content to be isolated in my bedroom like a bookworm. They didn't know about the sensory and social hell I was experiencing on a daily basis, or about the depth of my emotional disconnect from other kids and adults. They didn't know I cried myself to sleep wondering why I was so different. I was even allowed to eat by myself in my bedroom, rather than conversing with my family at mealtimes. I really didn't interact with anyone except when my American relatives came to visit in the summer, or if we went boating. In short, I was left to my own devices which were few.

    My daughter is HFA and I'm certain she is undiagnosed ADHD. As a child she had sensory meltdowns, perseverated interests, and social challenges. It was difficult to brush her hair or get her to eat much of anything because of an aversion to several food textures. She was identified gifted in her formative years and she attended several audition-only schools for enrichment learning, as well as an arts-based education. She is now a talented visual artist, a chef, and a published author of several books. She has over 200,000 fans reading her work online. MD learns in her own way and at her own speed. Online learning didn't work for her because of ADHD, and her inability to stay on task with the temptations of other web activity. She's always been most successful when given a wide range of choice, and the ability to think outside the box when learning. Organisation and procrastination are both issues for her. I don't know if she'll ever be self-sufficient enough with personal regulation to live on her own, but I'm happy to share my home with her as long as needed.

    She continues to have meltdowns as an adult, but I know how to respond proactively by giving her space. I've learned when to ask questions, and when to let her be.

    You mentioned that your grandson is selective mute. Does he actually require assistive technology to speak at those times, or is he able to express himself well enough later on, to compensate? For the most part, when I shut down verbally because of my mutism, I don't want to communicate at all by any means.

  • Teach51Teach51 Citizen
    edited January 17

    @Isabella:
    Your daughter has accomplished so much, that's wonderful.
    Little grandson just stops talking when stressed or unhappy and carries on again when he feels like it. It often happens when he is emotionally uncomfortable. He is also gifted musically and animals are his special interest. He is a wonderful boy.
    My son is also gifted, plays most musical instruments well and writes songs. Like me he failed magnificently at school and found his niche later on in life.I always told him that he would succeed at whatever he chose to do and he has.

  • @Teach51 said:

    Little grandson just stops talking when stressed or unhappy and carries on again when he feels like it. It often happens when he is emotionally uncomfortable.

    It's good that you notice a connection between his silence and his emotional state. Maybe it would help for him to have some directed instruction about his feelings so that he can better articulate and express them, when needed. I have Alexithymia and considerable trouble with Interoception (knowing how to read my body signals for hunger, thirst, pain, or even emotions). There are lots of resources online for children in particular to learn about emotions and about interoception. I'd recommend an OT named named Kelly Mahler (links attached). She has some great workbooks about recognising emotions both mentally and physically.

    In my case, recognising feelings is very hard. I didn't learn any of this as a child and therefore didn't even try to express myself or self-advocate. I'm sure that led to my shutdowns and inability to speak, as well as my traumatic experiences as an adult. If you can help him to understand his feelings at a young age, it may help him to speak more comfortably in a variety of settings. Even if it doesn't help with his mutism, it will help him develop into a more confident, self-aware person as he matures.

    https://www.kelly-mahler.com/social-emotional-learning/

    https://www.kelly-mahler.com/product/the-interoception-curriculum-a-step-bystep-guide-to-developing-mindful-self-regulation/?gclid=Cj0KCQiA3Y-ABhCnARIsAKYDH7ueO1OmaRWs7F4Gk4RqkJDmaER9bRb9jcP-zni3b5XvZZ5N4xrbdqMaAsl8EALw_wcB

  • Thank you Isabella, I really appreciate you taking the time to explain. I will check out Kelly Mahler. I love my grandson to bits and I want him to be as happy as he possibly can be.

  • BenderBender Citizen
    edited January 18

    You seem to have it covered pretty well, so I'll just ramble here about my experiences instead of actually giving advice

    What children (all of them) need above all in my experience is to feel loved, safe and accepted.

    It sounds simple and straight-forward but it's not, and it will also need some tailoring for people on the spectrum. For instance "being loved" and "feeling loved" are not the same thing, even for adults. I had to make sure I express love in ways my autistic son understands and recognises as such and some of them were different from what my allistic daughter needs.

    The point Magna raised is extremely important: to feel safe and accepted, they need to be allowed to be themselves at home in order to recover and recharge from the pressure, demands and overstimulation they have to deal with at school and amongst others. This can often mean they'll act out or behave worse at home, and parents need to understand why this happens instead of punishing them or putting even more pressure on them.

    As early as I could, I also started giving my son options about how much masking he does outside the home: I explained why some of his "natural" behaviours can make his peers or teachers hostile and let him choose when and how much effort he puts into preventing that. There were minimum requirements as acting in a non-violent and reasonably polite manner towards others, but he could choose himself if someone's potential friendship or making a good impression was important enough to him (as opposed to me or his mother) to make this effort. Understanding actions and consequences empowered him to start (in time) managing his own (limited) emotional resources in a way he felt he could handle and sustain.

    We also reduced the pressure at home as much as we could, in ways that were sometimes perceived by others as bad parenting and didn't cave in when people tried to tell me I'm doing it wrong, even before he was diagnosed. I'd rather see him acting in ways that can be seen as rude or defiant towards me and work through it than do so in situations where the cost would be much higher and others will punish him in some form or another for it. This one was a bit controversial and difficult, as I also had to help him understand (in time) that it doesn't mean he can get away with murder or establish a permanent pattern of bad behaviour at home.

    It's also absolutely crucial to stand up for them when needed and let them know you have their back. This doesn't mean defending them blindly or enabling every whim, but when push comes to shove, not cave in to pressure from other adults, even if it affects your relationship with them.

    For instance, for a long time my son couldn't tolerate almost any form of touch from anyone but my wife, daughter and myself and only certain types from us too. As a toddler, he would scream his head off if anybody else tried to pick him up, hug him, touch his hair etc. Even if we don't live in a touchy-feely culture, this still caused some issues and I was very adamant that I won't force him to do it to spare the feelings of family members or friends. It was also difficult because he would make no small talk whatsoever and only talked to adults he liked, which caused all kind of issues and jealousy between family members (we did talk to them and explained why we let him do it, but not everybody was happy with it). Now that he's almost an adult and has much better social skills and also more choice regarding who he interacts with, I noticed that he still resents and completely shuts out those who repeatedly tried to violate his boundaries and force him, while he became a lot more affectionate and conventionally polite with those who didn't, so as far as I'm concerned, it was worth ruffling some feathers along the way. But I had to prioritise his well-being and long-term development over other people's demands or feelings.

  • BenderBender Citizen
    edited January 18

    The relationship between people on the spectrum and their parents seems to often fall on two extremes: as kids, they are either constantly facing criticism (or even insults), being negatively compared to their siblings, cousins or peers, pressured to "be normal", fit in etc or sheltered and micro-managed to an unreasonable degree by parents who seem to think their kids can't learn life and social skills or be independent in time despite delays. This will stunt their development and make life very difficult for them as adults, as they never learned to do a lot of basic things for themselves or make their own decisions and unavoidable mistakes.

    How not to fall in either trap will depend a lot on functioning level and other individual factors regarding both the child and personal circumstances. Most can learn life and social skills but it will take time, effort, patience and consistency, being willing to tailor teaching methods to them and constantly evaluating and reevaluating what goals are achievable, when and how.

    A lot of people have rigid ideas about how children should be raised and behave, what milestones they need to hit and when. It's very common to just escalate and try more of the same thing when their pet method fails time and again. Instead of reconsidering their methods, they just think they have a "problem child" and often stop trying or put the blame and responsibility on their child.

    Even non-autistic kids will keep you on your toes and you have to think outside the box and get creative. It takes a lot of effort and patience and you need to find ways of dealing with your own frustration and examine your actions in an objective way, that's not defensive or emotionally loaded. You'll go through periods of regression or bad behaviour that you can't understand and it can be exhausting and disheartening sometimes, but it's also incredibly rewarding when you manage to figure it out and make a break-through.

    I'll give an example of how sometimes you need a bit of luck and creativity. My son had a phase when he would only eat foods that were causing him digestive issues and as a result, also made him cranky and set him back in many ways. It took us a while to figure out where the problem was, then we got stuck with it because he would rather go hungry (which only made things worse) than eat anything else and no matter how we tried to explain it to him, he couldn't understand the connection between what he ate and how he felt. It was an uphill battle and as he became more stressed, he started refusing more and more foods - we were at the end of our wits. One day, after my wife managed to coax him into eating something he used to like, she drew a smiley face on his tummy to show him how good that will make him feel. Lo and behold, he was so amused and fascinated by it, he wanted to show everybody the smiley, asked her to draw another next day, and shortly after he started to ask for "happy tummy" or "smiley" food You never know what will work and now we all call some things happy tummy food.

    I used "I" in my posts here, but a lot of these things were influenced or initiated by my wife and it's absolutely essential for both parents to be on the same page and support the same course of action. We also made our daughter part of it as soon as it was possible and discouraged sibling rivalry by encouraging cooperation and loyalty between them, going both ways. I'd rather have them team up against us than each other and this also paid off in time.

  • Teach51Teach51 Citizen
    edited January 18

    Thanks Bender, I am very emotional after reading that. I also fought the world fearlessly to protect my children. My son does the same. Intuitively he is doing the right things . When my grandson was a toddler and would have a meltdown I mistook it for a tantrum and complained that his father didn't discipline him. Through respect for my son I never interfered though I disapproved. My grandson never has a meltdown when staying with me without his parents ( not yet anyway:-), he seems to trust me completely and is very calm in my company, we have so much fun.He seems to mirror other people's emotions, if they are anxious so is he and if I am calm he is also.

  • BenderBender Citizen

    @Teach51 said:
    Thanks Bender, I am very emotional after reading that. I also fought the world fearlessly to protect my children. My son does the same. Intuitively he is doing the right things . When my grandson was a toddler and would have a meltdown I mistook it for a tantrum and complained that his father didn't discipline him. Through respect for my son I never interfered though I disapproved. My grandson never has a meltdown when staying with me without his parents ( not yet anyway:-), he seems to trust me completely and is very calm in my company, we have so much fun.He seems to mirror other people's emotions, if they are anxious so is he and if I am calm he is also.

    As I said, both of you seem to be doing great

    This subject is very important to me, even leaving aside the spectrum factor. A huge amount of people seem to be struggling so much as adults with problems stemming from their childhood and formative years and it has been said that "a bad childhood lasts a lifetime". Sometimes it's abuse or neglect, sometimes just ignorance and mistakes and facing the long-term consequences that result can easily make both sides defensive and emotional and prevent them from moving on. A lot of progress has been made, but we're also dealing with new challenges due to technological and social changes.

    Even if not fully developed, children are still human beings and their dignity and agency need to be acknowledged and respected more.

  • IsabellaIsabella Citizen
    edited January 18

    You have such a way with words, @Bender. Thanks for pointing out things that I didn't think to mention, like the fact other adults and family members may not agree with our parenting style, choices, or decisions. They don't always appreciate and respect the specific needs of our child, or else they recognise those needs but think we're doing it wrong. Advocacy and consistency are key, not just in the child's development but in the way you respond to input from others. In the case of a divorce it's even more important because the child may be receiving different messages from both parents, or both sides of the family, without either party being aware. I had a very hard time with my ex's mother who is extremely opinionated. She was already out of my life but unfortunately she spent quite a lot of time with my daughter, which often undid the parenting decisions I'd made as sole and legal guardian.

    What are your grandson's interests? Can you use these as stepping stones to help him learn skills in a variety of ways? Does he (or did he, prior to the pandemic) participate in any extracurricular activities? As a child, my daughter was active in private art lessons and she participated in musical theatre productions as a singer, dancer, and actor. She tried many other activities such as ballet, jazz dancing, ice skating, roller skating, and photography classes. She spent years in swimming lessons (I have a belief that it's our duty as parents to ensure children can swim, and it's also an excellent way to learn gross motor coordination / interoception). These all helped her develop talents and a level of confidence that I didn't have as a child.

    I sought her opinion regularly, even as a child, so she would know that her voice matters. Teaching her to make decisions and think critically started even as a toddler with simple questions: "Would you rather have peas or carrots?" and as she got older it helped to ask the simple question, "Why?" after she chose. "I don't like the texture of carrots" or "carrots take more time to prepare, and I'm hungry now" taught her to think for herself. This continued as she was a teen navigating her first (only) boyfriend of five years. She had to use these skills to think for herself when I wasn't there, and his family was very extroverted / NT / pushy about having her act like them.

    As Bender pointed out, it's also hard to parent two kids with diverse needs. Recognising and supporting each child's best interest is a juggling act. What worked for MD didn't work for my boy with ODD, ADHD, and behaviour problems similar to what you describe from your son. That's another whole story, which I'll save for another day!

  • My son lives in a 2 room caravan in an eco-village, in a kind of "tribe" where they weave their own cloth, grow their own food, a commune of sorts.
    Cooking gas is produced by processing human waste and they use solar energy for a few hours of electricity a day.
    They have a communal farm that the kids work on, basket weaving, communal singing and playing music round the campfire, they live a very simple and modest life.

  • Wow! That's fascinating! It sounds so idyllic. I hope that peaceful lifestyle will help your grandson to avoid a lot of the stressors of mainstream society.

  • Teach51Teach51 Citizen
    edited January 18

    I believe it will, it is an environment where gossip is frowned upon and they promote acceptance, diversity and freedom of thought.

  • BenderBender Citizen

    @Teach51 said:
    I believe it will, it is an environment where gossip is frowned upon and they promote acceptance, diversity and freedom of thought.

    This sounds amazing and very autism-friendly

    @Isabella said:
    In the case of a divorce it's even more important because the child may be receiving different messages from both parents, or both sides of the family, without either party being aware. I had a very hard time with my ex's mother who is extremely opinionated. She was already out of my life but unfortunately she spent quite a lot of time with my daughter, which often undid the parenting decisions I'd made as sole and legal guardian.

    Yes, this can be a nightmare and undo a lot of hard work. A friend's son lived with us for a few years due to his parents going through some difficulties and we basically co-parented with his biological parents. This wasn't a problem, but his grand-parents, very resentful that he's living with us instead of them, and as you say very opinionated and rigid, were. I can barely imagine the stress and struggles divorced people or those who can't get on the same page with their partner have to deal with and how destabilising it will be for everyone involved.

    Not even mentioning those who use the children as pawns or tools in the war they wage against the other parent or push them to take sides, but that's a whole different can of worms.

    Scenarios like this affect any child, but from what I've seen, children on the spectrum will need more support to understand and cope with this kind of thing. Conflict and inconsistency, in general, with be a bigger problem for them whether their parents live together or not.

  • AmityAmity Administrator, Citizen

    Im delighted that your grandson is in a Steiner school, what a fantastic and Autistic friendly approach to education and as a bonus since its inception, the Steiner Waldorf philosophy is inclusive to its core.

    Mastery motivation is one point I would like to add to the detailed information above.
    Mastery motivation refers to the intrinsic motivation children have to interact with their environments in order to learn about them. It appears early in life, and has been regarded by many researchers as a key motivator for development.

    Long term opportunities to nurture mastery motivation in special interest areas will have a lasting positive impact on a childs self determination. When other supports are gone the disposition of persistence in the face of adversity and the resilience to keep trying will be valuable for independent living.

    Nice overview https://www.naeyc.org/resources/pubs/tyc/oct2017/mastery-motivation-persistence-and-problem

    By a stroke of good fortune, I had the experience of mastery motivation with horses.

  • A thought about teaching him music, if you decide to do that:  Use a keyboard instrument, such as a piano or a synthesizer.  (These days there are cheap synthesizers available, if money is an issue.)  It is much easier to get an intuitive feel for the relationship of the notes to each other with a keyboard instrument than with any other kind of musical instrument.

    When I was little, I figured out how to play the piano by ear, on my own, at around the same time I  (belatedly) began talking, at around age 4.  Obviously I could not have done this if my parents didn't have a piano, in the first place, and I doubt I could have done this with any non-keyboard musical instrument.


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