I'm on the spectrum, as is DH, we suspect DS is as well.
Personally, as we're fairly mild, it isn't worth getting a diagnosis. We could have one each if we so chose, we choose not. It makes life harder for mild cases, not easier. And therapy to stop being me? I'm really that objectionable? Sure there are tricks I have had to learn to cope with everyday life, but a loving parent could have taught me them easily and with kindness.
As for the food - the body craves what it needs if it isn't provided. Trust me. In my life I have lived off the same very bland meals for a month and still been healthy. I then fancied a bit of a change. Have less of an issue with it now, but that's another story. Hummous, jam, fruit icy poles and fresh fruit juice DO contribute to the 5-a-day for fruit and veg. Your son's diet may be dull (for you) but it isn't the end of the world.
His diet is not something I'm willing to let go. It's not nutritious enough and he is not growing properly because of it. If he was, I wouldn't be concerned. If he ate one type of fruit or one type of veggie, I wouldn't be concerned. I AM concerned and I am not willing to let this go by (considering I was a child who was rather fussy although not anything to his extent and I feel it has impacted on my life in a negative way).
His diet is my main concern. I don't particularly care too much about the other stuff (although it is always going to be a little concerning), but it impacts my entire family and our day to day lives.
I'm not prepared to ignore the instinct I have had for over 3 years now that there is something amiss. If there is a way that I can help my son, I will. I want the absolute best for him. I don't want to regret just letting it be. I don't think there is an issue with me taking it a little further and trying to help him.
I'm not looking for therapy to stop my son being who he is, Why would I?. I LOVE my son for who he is. I want the best for him. I want him to be the best version of himself he can be. I don't want to CHANGE him, I want to HELP him. All I want are coping strategies to help him as an individual and us a family deal with his outbursts and this dietry thing.
Whilst I appreciate everyone's advice (no I'm not kidding I REALLY do!!), I do have to disagree that it is something to be left alone. I guess it's hard for people to understand what it's like as they haven't been in my situation, as I haven't theirs. I'm just looking for some ideas. I feel I'm a pretty open minded person and you know what, I'll be absolutely STOKED if I'm told by a few professionals that it's nothing to be concerned about and to just let it go and get on with life. What better outcome could there be?
But while I can, I will do everything in my power to find out where we should be going. This is not something I've decided is an issue all on my own. This is something that several more professional people that I have come across who have had dealings with DS have also raised concern about.
I do thank you for your reply TFB as it's helped me think a little differently and probably will continue to as I think about what you've posted more.
I TOTALLY get where you're at. Healing your son is not changing him. Sensory issues, autism etc are not personality disorders- you will NEVER change his wonderful personality. but you can heal his illness.
We have our son on GAPS. I would strongly, strongly recommend you read the book. Changing his diet was the hardest thing I have ever done. We did it through allowing him to starve himself (there is this food, or nothing) and then force feeding him. It was ghastly and went against everything I ever wanted to do as a parent. But my son was very, very sick. While their candida is so out of control it is controlling the body and all food cravings. these are NOT natural and allowing natural cravings to dictate in such as unwell person isn't a suitable approach.
I was frustrated like you that everyone applies "healthy child" rules on your unwell child and you know it's not working. My son is SO much healthier now and it makes my heart sing to see him run around and not have bags under his eyes and have nice healthy, strong looking limbs. You can help your son! Feel free to ask any questions
Sorry, Niadalla, I don't want you to think I was intending to have a go at you. But I do know that my mother freaked out about my diet and weirdness so much when I lived with her (really her "life skills assistance" was telling me not to be me - to be fair, this would have helped me in my teenage "you have to be dull and fit in else you are outcast forevermore" years if I had obeyed) and now I'm pleased she didn't get professionals involved, as it would have made my adult life a lot harder.
Would vitamin supplements help at all for the diet?
I can understand where TFB is coming from, but as someone who works with children, adolescents and adults on the spectrum I truly believe a diagnosis can be empowering. Your ds will be able to get the support he needs to navigate a world that is confusing to him. For adults that are very mildly on the spectrum I don't worry about formalizing the diagnostic, simply work on the strengths ad weaknesses being on the spectrum brings them and help the further those strengths and navigate any difficulties they may be having (just as you would with anyone not on the spectrum). For young children, early intervention is important and will assist in developing vital social skills to navigate friendships, develop communication skills (even with verbal children on the spectrum abstract language can provide much confusion) and build their strengths. Therapy won't take away who he is.
As for the diet, his avoidance of textures is a very real dislike for him, but I have seen kidsfind it easier with age and exposure. As I'm sure you have experienced there is no point in force feeding, it's stressfull for all and only builds the dislike for the food. Part of being on the spectrum is a dislike for change. This can result in not liking to try new things. Try playing with food without the need to try it (painting with veg as stamps, making a fruit face,etc). This may start to desensitize him to the idea. To be honest there is more you can do but working with a behavioral psychologist who can meet with your son and even better in your home would be best as me throwing ideas out on here is a little hard having no idea what your ds is like.
Hang in there, the will be many ups and downs in your parenting journey but it will all be very worth it.
I have to disagree with that there is no point force feeding. I know it sounds awful and it's not for every child but it DID work for us and I honestly feel we had exhausted the other options and my son's health was slipping away. I wont go into the details here but I do like to put it out there as an option to explore. Truly resistant eaters are very misunderstood, it is like infant anorexia and it's very, very hard to deal with.
Meow it sounds like your son was very much medically at risk. There is a link between anorexia and ASD. With an eating disorder though, force feeding is a last option and used when the person is medically at risk (as it sounds your son was). I'm not sure how you force fed and I truly do not hold any judgement, I have seen many families at this point and grew up with a brother who had a VERY restricted diet and my mum tried force feeding (it didn't work). The way I would go about it (and many may consider this force feed but I personally don't) is gradual exposure. Therefore choosing one food, then choosing a reward (eg a fav food he only gets in relation to 'trying new food', a special toy, etc). First the goal would be (if his reaction is to even not go near new foods or accept them on his plate) is have the new food on his plate, then touch, then smell, then touch his lip, lick and so on. I would keep a chart and he can put a picture or photo of the new food up when he has actually tried it and get a really big reward.
Overall, any feeding program should be under the guidance of a doctor to ensure the child is medically healthy. I have seen children go a very long time without food and drink just to avoid eating a new food and so medical guidance is important. Children with ASD are likely to go a lot further than another child and defy the 'they will eat when they are hungry' rule. With that said, I have recommended that approach before when a child was only accepting a few foods.
I guess what I'm trying to say (and I don't think it is coming across very well so I do apologise) is that every child will be different and it is not always easy to make the right choice. Meow, for your son it sounds like the idea of a new food was the problem (I may be wrong, what do you think?) and in this case I can see where forced feeding could work, however; if it is a texture issue I'm not sure it would (Tony Attwood has some info on this).
*I'm wondering if we have different ideas of what forced feeding is. I am not thinking don't offer any other food than what the rest of the family is having (I have used this approach before). Force feeding to me would be sitting on child and making them eat/try new food or a nasal gastric tube. Anyway just wanted to check, I am thinking we actually may be on the same page?
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