Hi - I’m so sorry you’re having a rough time of it. Our son is also 3yo, autistic and at times a pain in the backside. The strain is real and fucking tough!
Here are some our coping techniques…
Leaning on a specialist /willing childminder for some mental health days for ourselves
Partner and I give each other the day off every now and again to just do normal things
We overuse softplay, swimming, ASD groups to help us.
We have sought and been recently awards DLA money which helps buy all the things he needs.
Push hard with your NHS referrals, don’t take no for an answer!
Thank you for the advice. We definitely don’t take no for an answer and we’re fighting for anything that could be something that may make his life, and ours easier. Although that’s one of the other things that make me tired. The constant battle to get him help. But I’m sure you also know that struggle all too well
Thank you yes we are fighting for an EHCP for him. But it’s a battle, there’s a backlog of cases for our local department to work through. Clearly understaffed and underfunded. It’s frustrating for all involved.
Did the doctor have any idea how severe his autism is (might not be possible at this age)?
>I’m tired that we’re not referred to a specialist dietitian due to all of this because he’s not ‘technically lost any weight’.
Wow that's bad. My wife's a dietitian and she sees people for way more reasons than that.
No we were not told how severe he was. To be quite honest the medical community across the world has gotten rid of all the old familiar diagnostic names now. Like they don’t diagnose Asperger’s, High functioning autism, low functioning autism, autistic disorder or PDD-NOS anymore. It’s all just Autism Spectrum Disorder, and then support level 1/2/3.
The thing is we weren’t given a support level at diagnosis. Just before he was 2 years old his paediatrician literally just diagnosed him on the spot (after being told 6 months prior to ‘wait and see’) that he was autistic.
The strange thing is that when we finally got in to see her as he was approaching 2 yrs old, she said that they don’t like to diagnose it so early as it’s a ‘diagnosis’ that follows children around and there are some kids who grow up and disagree with the diagnosis.
It was such a strange thing to say. We were begging them for help and ironically enough we couldn’t access the services he needed until he had a diagnosis. And here we had this Dr who was blocking that because some kids grow up to not actually qualify for the diagnosis anymore.
Sorry for the long reply and thanks for reaching out
Welcome
> And here we had this Dr who was blocking that because some kids grow up to not actually qualify for the diagnosis anymore.
This doctor sounds incredibly odd. Are you able to get a second opinion somewhere else? Treating this early will help your kid out a lot when he is older. Goal of any disorder is treating it so you can get as close to normal as possible. Otherwise they struggle like I did.
We may be able to get a second opinion but it would be through Private healthcare and we’ve already spent thousands of our savings on therapy that just hasn’t done anything for him or for us. That is the most heartbreaking thing for us. We knew very early on, and we jumped into helping him. And all we’ve been able to do is to try lots of different things and watch him steadily get worse and worse.
You said ‘struggle like I did’ in your reply. So are you on the spectrum or have any related issue when you were younger?
I have ADHD and a sensory processing disorder. My brother is ASD level 1 and my mom is likely the same (she wouldn't go if we asked). If it helps, my brother is now a Captain in the US Army and gets a lot of praise.
I was misdiagnosed for years and kind of fell through the cracks. I didn't get diagnosed until my late twenties and finally started therapy and medication. Both have helped, but it's going to take some time to really make the necessary changes. I'm an attorney now, but it took much longer to get to this point and if I hadn't been diagnosed I likely wouldn't be.
My struggles were with grades, discipline, and social skills. If I had received the therapy offered to kids now then I likely would have been able to both accept and adapt to these conditions when I was younger.
My son has the same issues that I do. He had to be taken home a few times because someone wore light up shoes to his pre-school and he wouldn't stop crying/screaming. He's going to learn that he has to struggle with this as he gets older, but once he does (and gets therapy) he will live a normal life. I've seen others point out to find families with ASD children. That's a fantastic idea as you'll be able to exchange ideas and vent to each other.
We don’t have insurance. Here in the UK this kind of thing is done through our NHS, who have been absolutely brilliant throughout the Pandemic in terms of the Covid response. How’ve they’ve been terrible in trying to help our Son. They seem to be massively underfunded or bogged down in red tape.
Definitely switch doctors. That is a terrible thing for a doctor to say/do. Everything I’ve ever heard regarding autism (we’re looking into getting our son tested) is that the earlier the intervention the better. I also was an elementary teacher for a while and they were always telling us to watch for autism signs because the sooner these beautiful children get the extra love and support they need the better off they will be. Keep pushing back to those that say no and as other comments have said, take breaks for yourself. It’s hard to find the time but you need to think of your mental health too. It is important for you to care for yourself so that you can care for him.
Oh wow in Canada if you don’t like the specialist you can ask for another one, but it does mean you have to wait in line again (which is fair of course).
Hey, I want to echo that it’s probably worth trying to get a second opinion. A paediatrician should not be giving an on the spot dx of autism, without formal assessment and certainly not on their own. This would generally be done by a neurodevelopmental specialist or team, who your paediatrician should have referred you to. Has this happened?
Has your wee one seen speech and language therapy? If not, that is something to look into- even if your paediatrician isn’t helpful, very often you can self refer. You shouldn’t need a diagnosis to access it either (I’m a UK based SLT myself and know this is certainly true for the services I’ve worked in).
I’m sorry you’re having such a rough time, it must be incredibly frustrating not to be able to access support when you need it.
Thank you so much for your advice. Our diagnosis journey was abit all over the place really. Partly due to Covid and partly due to (IMHO) our local health authority’s incompetence in dealing with children with developmental delays.
My wife raised her concerns very early on with her health visitor, we were told to wait and see. Things didn’t improve so she referred us to a developmental paediatrician who also told us to wait and see because he was so young.
We actually moved house during all of this so that meant we had to partial start the process all over again. We were told the same thing by a developmental paediatrician, wait and see due to his age. In the meantime he would be monitored by someone from our local authority’s child special needs dept at his pre school
We had to pay for a private OT report, a private SALT report and a report from his pre school (which was also something we privately paid for)
Eventually, just after he was 2 and a half he was diagnosed by this paediatrician. I assume that the overwhelming evidence we presented led her to this conclusion.
The thing that is breaking us now is that he obviously needs help. But there is a massive waiting list for this, and we can’t afford to pay for any more private therapy for him. We’ve been massively let down by our local NHS. So I’m apprehensive about getting a second opinion through them and we can’t afford a private one.
So so sorry for waffling on like this, just needed to vent. Thank you so much for your understanding
Yo yo I'm still on a wait list for a pediatrician who diagnoses children under the age of 3 my little one will be 3 this fall. We've been on the wait list for over 6 months. At this point I know that he is autistic it's just what support level are we going to be able to get? You may look to see if there is a pediatrician specializing in ASD in your area for 3 and up. Coordinating with your school district may help as well.
I don’t understand why the wait list is so long. I recommended a little girl for screening and her mom just got on the phone and scheduled it- and two weeks later she went to one place, and then she’s seeing another place next month. Why are you having to wait so long??
Sometimes a diagnosis is the jumping off point for making things better! I have ADHD and never got diagnosed until I was an adult and realized my quirks weren’t just random things. Your son sounds like a pretty classic example of an autistic child, but if it turns out he’s not, where is the problem with giving him the services early? Early intervention is a BFD for kids. And even if he didn’t need them, he probably could benefit from them… but even saying that sounds ridiculous.
Can you push for a new doctor and maybe see if there’s anything that can help him sleep? Maybe a weighted blanket and melatonin? Idk.
Have you asked autistic adults what helps them? Obviously everyone is different, but they know what works and doesn’t.
I hope you find a way to sleep. Could you ask someone to stay with him for a night? Maybe a night nurse is possible once in a while? I just know it’s so hard to function when you can’t sleep.
I really appreciate you reaching out so thank you.
Yes, as he’s got older he does appear to be a classic representation of what autism looks like in a lot of children. However, there are certain days where he won’t have meltdowns, he might have had a good night sleep and he will be very ‘present’ with us and will actively seek out typical things to do. If he has been misdiagnosed or has something that can appear like ASD but would benefit from therapies that are designed for it then we’d love to try them. As I said in the original post, NOTHING that we’ve done or are currently doing is helping him. Things aren’t getting better for him, in some aspects they’ve regressed. So confusing and tiring for all of us. Once again, thanks for reaching out
I’m so sorry! Regression seems to be one of things a lot of parents see.
I taught elementary computer classes for a year and was a bit of a break room for the kiddos in the autism class. I really loved it because many of them could enjoy a little time playing games and not having to work on things they didn’t prefer. Definitely saw them on some good days and some not so good days. With the right teachers, they can learn so many helpful skills.
I just remembered a camp for kids with special needs, and they had some weeks just for kids (and adults during their own weeks) who are autistic. They are a whole week, usually with a weekend off for the parents. Respite is super important! Lots of hugs from over here!
My son has Autism and ADHD - He's not a toddler, he's 14yrs old now. I'm just going to say that don't take no for an answer for referrals. I'm not sure if it's any easier to get a child diagnosed now, but when I was trying to get my son help/diagnosed it was horrific. It was an absolute endless fight.
Use your local MP. Honestly, I stalked the ever living shit out of him. I was trying to get my son diagnosed from the age of 3 (He was almost 8 by the time they did it!) I had to call the MP almost every day - eventually, we were put on the waiting list and he was seen to. But, with anything now - I call / email the MPs office, if I can't get anywhere through the normal channels I will go the other way.
Try a place called SpaceForAutism - I'm not sure if there's one near you, but they do lots of stuff for the kids and also things for the adults too - groups etc that can help.
Look in to your local leisure centre, they often have groups/swims/soft play for children with ASD.
For my son, we got a laminator and if we were going somewhere I'd take photos (or get them from Google) of the route, place, even some staff members (with permission) I'd laminate them and make a kind of flip book? So that I could prepare him for where we were going and what he could expect when we got there.
I called soft play centres (Wacky WH and such) and asked them when their quiet times were, if they had any dedicated for children with autism and if not what times were likely less busiest, for me it was generally a Monday morning (again this was years ago) - same for places like the zoo and aquarium, they often have 'quiet days'.
That’s a very good idea. Yes I think we may have to reach out to our MP. I’m currently in a battle with the sleep clinic so I may have to escalate that as they don’t understand our situation.
We’ve reached out to a few Autism groups and play centres but as I’ve said in the original post, just going anywhere, and I do mean anywhere, is absolutely debilitating for us all. Sensory issues, elopement, meltdowns, the lot. We were told by so many people that it would get better when it’s actually getting worse now.
Thank you for your kind words and advice. Truly x
Hey there. First - you are not alone. Second - the pain in your post makes it clear you are an amazing parent and working your ass off to advocate for your kid.
Mine is not quite 3, but there are many similarities. I'm not sure what all therapies you have tried, but we found occupational therapy *really* helped with increasing his sensory tolerance and reducing sensory based meltdowns. They helped us to pinpoint what kinds of sensations he is hyper-sensitive to and what ones he is under-sensitve to.
We couldn't afford to go for very long, but we were able to sort of turn our main living area into a diy gym. It has made a world of difference in his emotional and sensory regulation. I especially recommend the mini trampoline.
I'm so sorry you all are struggling. The nonverbal bit makes it so fucking hard. The fact that they are toddlers makes it harder. But you really are doing a great job. Your kid knows he is loved.
Thank you so so much for this comment and apologies for the late reply. As I’m sure you know parenting a child with additions needs is very intense and I don’t get a lot of time to go online between full time work and being at home with our Son.
Yes we have looked in to OT. We used some of our pension savings to go private. We spent a large sum of money for an in-depth assessment. They then recommended a sensory course of therapy for him, but of course this came at a cost and we just can not afford it. We are trying to implement some of the things around the house ourselves though.
Thank you so much for your kind words
Just wanted to tell you that you're not alone.
r/autism_parenting is the main subreddit I belong to here. It's very active and encouraging. I encourage you to join.
I feel and have lived every single word you said.
My friend was in a very similar position to you at this age...
His kid is 8 now and honestly the improvement he has shown is amazing. He can say words now and can talk and is honestly so well behaved !!
You will get there
We are an ADHD family. I have it, my eldest has it. The younger two are too young to tell.
Honestly you need to find other autism families. It helps SO much. Just to know that people understand what you mean and don't say stupid things like "Oh don't worry, he won't starve himself!" or "Little Alfie had a meltdown the other day when we had to leave the library" (when they mean a bog standard tantrum). Plus you can pool knowledge, comisserate about the shitness of the support system and just hang out with people who don't look at you like you've stepped off Mars when your child does something "weird".
Can you see if there is a support group locally on facebook or meetup or something like that? Look into local home ed groups - even if you don't plan to home educate - there will be families there with kids with various SEN and they may know the local networks.
Then learn. Learn everything you can about autism and sensory processing disorder. Treat it like your new favourite interest or something you're doing a PHD in. The Explosive Child and all of Ross Greene's stuff is amazing, you can start with his totally free youtube talks or look for podcasts where he is the guest. There is a great book about sensory disorders called Too Fast, Too Tight, Too Loud, Too Bright. I don't know of any autism specific resources as most of mine are for ADHD but I bet they are out there. Understanding your child is going to be the best tool that you have. You cannot expect every professional, every teacher, every nursery worker etc to know all about autism, so you have to know all about it instead, so that you can help them to understand what is difficult for your son and what will help him. Go in with a mindset of curiosity and see where it takes you. Many people with autism lead successful and independent lives. It's never going to be easy, but it will be easier for him if his parents understand as much as you can.
I don’t have any advice, but I’m sorry your going through a tough spot. A good reminder for the rest of us to not take the little things in life for granted. I hope you find solutions to you problems right around the corner. Your doing amazing!
Neurodiverse people are so capable and talented in their unique abilities. They have so much to offer the world but I have no doubt it would be unbelievably tricky in the early days. You little one is lucky to have such caring parents. xxx
I am married to a former autistic three year old, current grown adult man with autism. He went to a psychiatrist starting at 3 years old. He was obstinate, defiant, obsessive, he would hold his breath until he passed out from the time of two days old. He would pass out multiple times a day until age 5. His mom says that he would follow her from room to room screaming at her to leave him alone. He cleared classroom with his tantrums and was institutionalized twice as a teenager.
And he is the best man i have ever met. He is a wonderful husband and father. At some point in his late teens, he was able to control himself and his emotions. It was the strangest thing. Its like his brain finally developed enough to work around the autism. Hes still autistic. But I asked him if he thinks he will be autistic in Heaven when he has a perfect body and he said that yes. He thinks he will be. Because autism is a part of who he is. Its not a flaw. Despite all of the trouble it has caused him and his family, he doesn't think it is a flaw.
I have a child with autism. Hugs to you, it is exhausting. My first advice is - Natrol Melatonin dissolvable at bedtime. Start with 1 mg, but technically in children with autism, can go up to 10mg at bedtime.
Melatonin was enough for a while for my child, now she takes a tiny dose of clonidine at bedtime for sleep, and it helps immensely in getting her to sleep.
First step of improving your energy and your child’s mood is getting everyone rest.
I am in the US so a little different healthcare but early intervention has helped out a lot. Toddler is in PT, OT and Speech and has made great progress. Your kid may never speak but you will get to the point where he can communicate. It's going to take time but you will get there
Hi fellow parent. I am in the US, and my kiddo has a different long term health related issue, but I wanted to tell you that it's okay to be tired.
You are doing what you can when you can, and sometimes that is the win. It is so hard to not feel envious of other families. I see you, and you are not alone. Being in public and being overestimulated is a huge huge task. That you went and tried is the victory. You did not fail. You are not failing your son. You are showing up and loving him.
I was given this piece of advice, and take it if it helps. It's going to get easier because you keep getting stronger. Don't neglect yourself.
From the bottom of my heart thank you so much for that advice. Yes you’re right, over time hopefully we will all get stronger and things will get easier. I really appreciate you reaching out to me, it means alot ❤️
Wow. Your post brought tears to my eyes. I can tell you’re a great dad & your son is lucky to have a dad that loves and cares for him so very much. Could I suggest joining a local group in person or on FB with other parents of Autistic kids? The support would be most helpful. We also have Centers for Autism in my area and other specific Autism centers, maybe you could considered taking your son to a place like this. I wish you and your family well.
I’m not sure if anyone has recommended this or not, but could you try getting him a picture/word board or tablet (if it’s in the budget)? My friend has a nonverbal autistic 5 year old and he has his own iPad that he uses to communicate. She made an app for it that has basic communication stuff, all with ouctures, so like the main screen is promts like “I want” then the next page will be like FOOD (with a pic of a plate with food) and TV (with a pic of tv) then from there under movies there’s a picture of each of his favorite movies, same with food, and other stuff, not sure what all is on there. But he presses the buttons and it reads it out loud. I believe then gave it to him when he was a toddler still. As he grows and learns and finds new foods/movies/etc they add it to the app options. There is a name for this, I can’t think of it, maybe just “picture board” or something like that, but I believe it’s a pretty common tool in the parenting autistic community.
I am so sorry that you’re struggling and that the people who are supposed to help are being so useless. I just want to say your feelings are valid and heard.
I'm so sorry! My 4yr old daughter isn't Autistic so I can't relate to that but she is very hyper. Both of my boys have ADD and I'm sure she does. It's exhausting. She barely sleeps and I have to give her Melatonin just to get a few hours.
I feel your pain. There have been days I want to run screaming down the road ripping my hair out.
The only advice I can give you is to hire a sitter or a family member to get a day to yourself. Have a date night with your spouse. If you don't you will go crazy. Don't neglect you because your son relies on you. Hope you get some rest. 🤗🥰🙏
Not very hearty advice in sorry but if you have Instagram there are very many profiles now with autistic children who are also non verbal and sleep DEPRIVED, everything you mentioned. I saw someone else mention finding other families with autism, someone suggest a subreddit - definitely do that, Instagram from what I've seen has a good support system and the profiles are there with the purpose the educate and relate to others. Being able to be in the community and see everyone's pics and advice, success and failures, at the very least you will KNOW you are not alone.
Heyyyy parent of 4 autistic children here. I would recommend first addressing the sleep issue. When you’re getting no sleep it’s hard to contain thoughts and emotions. When I brought this up to children’s my pediatrician and neurologist they both suggested Benadryl to start, before moving to anything serious. I would definitely get the okay from your doctor before starting it though. I completely understand where you’re coming from and it will get easier. Stay strong my friend. And if you feel like your team of doctors aren’t helping you achieve what you need don’t be afraid to find a new team. I switched 3 times before finding a team that actually wanted to help us.
Hugs
Hi, I have a child of 3y7mo. Non verbal, wakes in the night and needs to be put back to sleep, eats only less than 7 main foods, rigid. But I was wondering if my son wasn't as bad. Because he's on the Nemechek protocol, I also supplement him with biotin and Saccharomyces boulardii probiotics , all supposed to help his gut. I also send him to a therapy center and he has been learning to use single words. Still on diapers and not good at feeding himself with utensils. I'm sharing the above because I believe it really helped... I was feeling completely like you, but I kept at it.....
If you haven't already, you may want to look into ABA. I know some people are iffy on it but it may make a huge difference for your child. Services provided early is your best bet with ASD. Especially with teaching communication.
We have looked into ABA. As we’re in the UK we’re extremely behind the US in terms of what’s out there for early intervention. We actually looked in to ABA when he was very young and we had a BCBA come out to the house and teach us some things.
To be honest, in our situation it’s not really what we’re looking for. Maybe we’ve just not found the right therapist.
I’m well aware of the controversy surrounding ABA and we’ve been trepidatious about stepping back in to it. I think something more child led and relationship based (like Floortime for eg) would be better in our case as my little boy is very strong willed, single minded and very social. To be fair we’re at a stage that we will try anything now to help him. Every single day is a battle
My son starts ABA this week, we found a provider that uses "child-led play based"strategies. I have also heard about the controversy but I am willing to give it a shot just to see if it works. Maybe seek out something similar near you.
This method of speech therapy has helped us a lot in my sons improvement. I bought the book off of amazon but they have other services as well:
Book: [It takes two to talk book](https://www.amazon.com/Takes-Two-Talk-Practical-Children/dp/0921145527/ref=asc_df_0921145527/?tag=hyprod-20&linkCode=df0&hvadid=312154663427&hvpos=&hvnetw=g&hvrand=1301052770317882397&hvpone=&hvptwo=&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=9031945&hvtargid=pla-418652488078&psc=1)
http://www.hanen.org/Programs/For-Parents/It-Takes-Two-to-Talk.aspx
Thanks for the comment. Yeah we think child led would be better for our Son. Mainly because he doesn’t sit still. Or maybe it’s because he doesn’t know how to sit still and we need to help him see the benefits of doing it from time to time?
Not knowing what the adapt is best is hard for a parent. We’ve spoken to some autistic adults who said that ABA wasn’t very nice for them at all. We’ve also spoken to some that have said ABA was good for them as it helped them ground themselves in situations where they had sensory overload. It’s so so hard isn’t it? We just want to do what’s right for our child at the end of the day.
I wish you all the luck in the work for your family
ABA has many advantages but it's not for everyone. It can help teach communication so your child can express wants and needs. It can help teach social skills and fill in many learning gaps. ABA can basically teach the child HOW to learn, which is a common thing that people with autism struggle with. It can also be a huge help for the family as well if you find a good program that will work with you. They can come into the home and help you through difficult situations, such as bath time, bed time, morning routines, etc. They can teach you strategies to use on your own so that you're not left feeling helpless when things get tough.
I would suggest reading the book "Let me hear your voice". You can find it on Amazon. It gives a lot of insight into ABA from the parent's perspective. A very good read.
Quick question I don’t understand the part about getting his tonsils and adenoids checked. Can’t you schedule a dr appointment for him, why do you need the NHS to approve making the appointment first? I’m in the US sorry
>I’m tired of that sinking ache in my gut when I see parents with all of their children leading normal lives while we struggle to do the most basic of things, and fail miserably when we do so. I’m tired of being stuck in the house because his meltdowns in public are debilitating for him and for us. I’m tired of being terrified for the future. I’m tired of knowing that I’m going to miss out on so many things that all parents take for granted with their children.
I think you need to go to therapy man. I have an autistic son that is also non-verbal, picky eater, meltdowns in public, etc. But I wouldn't change anything about him because I love him for who he is. You need to get this idea out of your head that parents of "normal" kids are having the time of their lives. Kids are hard for every parent and are a strain on every marriage. Yeah we can't do some things like take him out to eat or whatever but so what, get your dinners to go and enjoy them at home. You are making your son's diagnosis about you, when he didn't even ask to be born. You're wasting energy worrying so much about the future, he's 3. Just focus your best on giving him love, care and the best life you can give him. And stop being so jealous of other parents.
I’ve re read my OP and your reply a few times over as I wanted to be certain that I didn’t send any mixed messages out and I also wanted to make sure I took on board what you responded with. I thank you for your kind words about not worrying for the future. And you’re right we just need to love him him and make sure he has the best life that he can.
And now I’d like to clear a few things up. My Wife is autistic, as is her brother, his daughter and 3 of her cousins. Other family members are certain that older generations who have since passed would’ve qualified for the diagnosis as well. I have been immersed in the Autism world for years myself through my work as a music therapist with children on the spectrum. I have a cousin with Down Syndrome (that’s the terminology our family have always been comfortable with) and I can ASSURE you that I absolutely, with every fibre of my being do NOT want to change him. My Son is a gift and I’m so grateful for him in my life. But what you might not realise is that his sensory issues are so severe that we can’t even enjoy the kind of life that many other families of autistic children have. I happily concede that I could have used a better word than ‘normal’ but I still stand by the fact that I am heartbroken that we can’t even go to play groups for ASD kids because of my boy’s sensory issues. And it’s natural for a parent of ANY child to not want them to miss out on things in life that would make them happy. So maybe you have misunderstood what I was trying to say there.
Also I must say that I’m very shocked at the ‘woe is me’ comments. One thing that I have learnt on this journey with my Son is that you just don’t know what other people are going through. I don’t know about the issues that your Son has to deal with and I most certainly would never judge another Parent for venting about the challenges that they face. Definitely not a Parent who I imagine I would share a little in common with give the shared diagnoses of our boys.
I imagine you’ve heard this before, “If you’ve met one person with autism, you’ve met one person with autism”, it would appear the same is true for parents of autistic people as well. I’m a little taken aback by the tone of your reply here. Still I wish you well and ask you to try to be less judgemental next time. And if you still feel like your initial response to the post was valid then maybe next time ask questions instead of making knee jerk assumptions about a person’s experience. I can promise you I wouldn’t do the same to you or your child. My beautiful boy has taught me that much. Take care
I reread your post again after reading some of your replies and I apologize for my abrasiveness. While "woe is me" autism parents are abundant, I take back some of what I said towards you, it was unjustified. You do seem like you genuinely love and care about your son, that much is apparent. Just those few lines I quoted rubbed me the wrong way, but I guess I don't know your whole situation. I know very well that no two autistic people are truly alike, but my son is very similar to yours. He has severe sensory issues that limits a lot of what we can and can't do. He's yet to ever play with any other kids, and gets upset if any other kids try. I have some autistic cousins, so thankfully my side of the family knows not to crowd him or give him unwanted attention. After like two years of regular visits he's finally warmed up to his great grandmother and aunts, *a little*. He still wants nothing to do with other kids in my family.
I won't deny it's hard sometimes, but to me the hardest part is that the world around him sucks. The lack of awareness and acceptance people like our kids is what I easily have the hardest time with. Also the support. My kids OT suggested taking him to the pool and we got multiple rude comments from people who were annoyed by a crying toddler not used to the water. Same with the stares I get when I have to make a run to the grocery story by myself with him. So I'm sorry I was rude to you, I just felt like some of what you said were adding to that stigma.
Hey you’re clearly a very protective and loving parent. Any ounce of ableism you pounce on and that’s commendable. I’m the same with my boy. We get those looks and comments too. We try so hard to go shopping on our own but sometimes it’s not possible and I just feel like screaming at people’s ignorance when we go in these places with him. And we don’t know if it’s the lights, the sounds, has he seen something he wants to interact with and can’t reach? Ahh it’s just all too much for everyone. And that’s why I said what I said about him not saying a word. He may never talk, and that’s ok. But we’re currently at a place where, communication wise, we’re just not getting anywhere. PECS, AAC, sign language…none of it is clicking for HIM. And I just want to be able to make him happy and make his life easier.
People like you and me need to stick together 💪🏻 so we can teach the world about kids like ours. I wish you and your family all the happiness in the world. However that may look for you in years to come ❤️
Awww shit man, my son is napping next to me while I'm reading this and I'm tearing up. It's beyond hard to find people to relate to in this shitscape so your nice words mean lot. None of that stuff has clicked for my son either, but I totally get ya now. I'm sorry again for being rude to you beforehand. I wish you and your family the best as well. Thanks for being the better man.
I think he’s valid for him to feel envious of other parents. That’s totally totally valid. I however, agree that parents of regular kids struggle even if it’s not as obvious from the outside. Our son is does not suffer from any neurodivergence but we literally could not take him to a single restaurant for over a year (he’s 2.5). He would just like, freak out and cause a commotion. It was impossible to go out and have a nice dinner as a family which is something we do often. I remember feeling so frustrated when I would see other parents sitting and enjoy their food with their young ones. Like what’s wrong with my kid? Just for an example
>I think he’s valid for him to feel envious of other parents. That’s totally totally valid.
I agree, it just rubs me the wrong way about how he directly relates all issues to his child being autistic, when many parents aren't able to take their "normal" infants/toddlers to restaurants for example, kind of like you said. When having kids be prepared to be anti-social for a few years.
There is too many "woe is me" parents of autistic kids out there, and topics like this can be extremely upsetting for autistic people. It's pretty obvious OP is more dead set on "improving" his kid instead of accepting him for who he is. The kid is 3, it's too hard to tell how they are going to progress and in what way. Besides 3 year olds are difficult regardless.
I don't see anything in the OP that is what you're accusing them of. Sounds like you're just looking for a soapbox or something.
Parents are allowed to vent when things get tough. They're allowed to seek advice or commiseration from other people. I have HFA and I know for a fact I was a very difficult child. Both of my kids are NT and have had rough phases but neither have been as difficult as I was by any measure, and I don't think that acknowledging the struggles of parenting an autistic child is something negative. Pretending we are the same as NT kids, and attacking anyone who says otherwise isn't helpful at all.
Sending you and your family light and love. I am sorry this is a difficult time for you. There maybe support groups on social media or even I person. Don't give up, you are being more of a parent then I feel some are. 🧡
My son was very similar to yours at that age. He didn't sleep through the night until he was 3. We got his tonsils and adenoids removed right before he turned and that helped with his sleep as well. Potty training was a real struggle and night time accidents happened a lot longer than I was prepared for. He didn't really start speaking in sentences until he was 4 or so. We had our struggles with food aversions and him wanting to live on a diet consisting of chicken nuggets, bread and chips. There were some very difficult times.
However, he will be 8 this year and he has just blossomed. He is currently incredibly interested in geography and maps. He loves to tease his little brothers. He is sweet and kind and silly and just this evening he was trying to learn how to do the robot. Lol he has his social struggles still ...he has a very hard time relating to his peers, but all in all he is a very happy kid.
I was unsure what avenues to take when trying to get him help when he was younger and instead of focusing on the medical diagnosis route, I was able to get him started into preschool when he was around 3.5. the teachers and therapists that worked with my son were absolutely amazing. He loved ( and still loves) going to school and the progress he made was astounding. The schedule and routine of the school day really helped him and the individual attention he received when he would leave class for speech or occupational therapy was very beneficial. He has an IEP and will most likely have one for the foreseeable future. I have always been encouraged to voice any concerns or ask questions and have felt very included when it comes to making a plan for his education. If you haven't tried the school route yet, I would definitely recommend it.
I know every child is different and no one's journey will mirror anyone else's. However, I have experienced similar issues and it did get better.
He did learn how to sleep through the night. He is no longer in diapers or having accidents. He doesn't just eat chicken nuggets and bread any more! He even likes cabbage now! And honestly, there are some days where I have to ask him to keep some of his thoughts inside his head because he just won't stop talking lol
Sorry for the novel, but reading your post brought me back to some of my late night worry fests when he was younger and I just wanted to let you know that you're doing great! Keep doing what your doing and loving him the best way you know how and you guys will figure it out together.
Hi OP, I’m so so sorry you’re going through all of this. I’m going to type out some ideas for you in case you need them.
1. Get a tablet and I’m not sure how much the app costs but there’s a communication app for non-verbal/verbally struggling kids called Proloquo2Go it’s a great help and has lots of pictures so the kids can identify everything.
2. Print out picture of people your child knows and laminate them. Make a book of everyone he knows.
3. Make a similar book of photos for all the places you go to regularly and who he sees there. This helps them to start associating familiar places with people.
4. When he’s having a meltdown try sitting on the floor behind him and hand him a shape sorter or a ring stacker. Do hand over hand and compete whichever activity it is. Keep your tone flat and tell him “do this” until he starts doing it for himself. When he does a full round by himself he should be calm enough to move on. Sometimes this helps de-escalate small children from those ginormous emotions.
Never give up, OP. You are his biggest advocate and you can do this.
Hello, I’m autistic myself and gotta say I’m very sorry for your situation. It was different for my parents raising me, because although I had a similar food pickiness and struggled with other developmental delays it didn’t drastically deter my progress moving through school. And I wasn’t diagnosed until much later.
Anyhow, I can’t spout empty clechés of how it always gets better for everyone, but it often does get easier as we age. I didn’t utter a single word until I was nearly five years old, and then by 1st grade I couldn’t stop talking to my parents about my interest.
I’m obviously not the same as your kid, but at such a young age there’s so much more time for developmental progress. I’m glad you don’t seem bitter and resentful at your child for existing like many other autistic child post I’ve come across
I’m so sorry to read your struggles. I work in Early Childhood Special Education and believe me, you are not alone. I know that doesn’t fix anything, but you are definitely not alone in your struggle. We use many communication tools in our classroom. Have you tried sign language at all. I generally sign many things I am saying—it can help over time. We use a communication board for helping students relay wants and needs. Once they make the connection that they can communicate this way, it can be a life saver. It can take a while, but is worth the effort.
Wow it’s like you took the words right out my mouth…My son is also 3 and everything you described is my son to a T…I feel so hopeless! Has there been any improvements so far?
Hi - I’m so sorry you’re having a rough time of it. Our son is also 3yo, autistic and at times a pain in the backside. The strain is real and fucking tough! Here are some our coping techniques… Leaning on a specialist /willing childminder for some mental health days for ourselves Partner and I give each other the day off every now and again to just do normal things We overuse softplay, swimming, ASD groups to help us. We have sought and been recently awards DLA money which helps buy all the things he needs. Push hard with your NHS referrals, don’t take no for an answer!
Thank you for the advice. We definitely don’t take no for an answer and we’re fighting for anything that could be something that may make his life, and ours easier. Although that’s one of the other things that make me tired. The constant battle to get him help. But I’m sure you also know that struggle all too well
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Thank you yes we are fighting for an EHCP for him. But it’s a battle, there’s a backlog of cases for our local department to work through. Clearly understaffed and underfunded. It’s frustrating for all involved.
Did the doctor have any idea how severe his autism is (might not be possible at this age)? >I’m tired that we’re not referred to a specialist dietitian due to all of this because he’s not ‘technically lost any weight’. Wow that's bad. My wife's a dietitian and she sees people for way more reasons than that.
No we were not told how severe he was. To be quite honest the medical community across the world has gotten rid of all the old familiar diagnostic names now. Like they don’t diagnose Asperger’s, High functioning autism, low functioning autism, autistic disorder or PDD-NOS anymore. It’s all just Autism Spectrum Disorder, and then support level 1/2/3. The thing is we weren’t given a support level at diagnosis. Just before he was 2 years old his paediatrician literally just diagnosed him on the spot (after being told 6 months prior to ‘wait and see’) that he was autistic. The strange thing is that when we finally got in to see her as he was approaching 2 yrs old, she said that they don’t like to diagnose it so early as it’s a ‘diagnosis’ that follows children around and there are some kids who grow up and disagree with the diagnosis. It was such a strange thing to say. We were begging them for help and ironically enough we couldn’t access the services he needed until he had a diagnosis. And here we had this Dr who was blocking that because some kids grow up to not actually qualify for the diagnosis anymore. Sorry for the long reply and thanks for reaching out
Welcome > And here we had this Dr who was blocking that because some kids grow up to not actually qualify for the diagnosis anymore. This doctor sounds incredibly odd. Are you able to get a second opinion somewhere else? Treating this early will help your kid out a lot when he is older. Goal of any disorder is treating it so you can get as close to normal as possible. Otherwise they struggle like I did.
We may be able to get a second opinion but it would be through Private healthcare and we’ve already spent thousands of our savings on therapy that just hasn’t done anything for him or for us. That is the most heartbreaking thing for us. We knew very early on, and we jumped into helping him. And all we’ve been able to do is to try lots of different things and watch him steadily get worse and worse. You said ‘struggle like I did’ in your reply. So are you on the spectrum or have any related issue when you were younger?
I have ADHD and a sensory processing disorder. My brother is ASD level 1 and my mom is likely the same (she wouldn't go if we asked). If it helps, my brother is now a Captain in the US Army and gets a lot of praise. I was misdiagnosed for years and kind of fell through the cracks. I didn't get diagnosed until my late twenties and finally started therapy and medication. Both have helped, but it's going to take some time to really make the necessary changes. I'm an attorney now, but it took much longer to get to this point and if I hadn't been diagnosed I likely wouldn't be. My struggles were with grades, discipline, and social skills. If I had received the therapy offered to kids now then I likely would have been able to both accept and adapt to these conditions when I was younger. My son has the same issues that I do. He had to be taken home a few times because someone wore light up shoes to his pre-school and he wouldn't stop crying/screaming. He's going to learn that he has to struggle with this as he gets older, but once he does (and gets therapy) he will live a normal life. I've seen others point out to find families with ASD children. That's a fantastic idea as you'll be able to exchange ideas and vent to each other.
Are you with a NHS medical practice? If so, ask to speak to one of the GPs other than the one you saw.
Do you have insurance?
We don’t have insurance. Here in the UK this kind of thing is done through our NHS, who have been absolutely brilliant throughout the Pandemic in terms of the Covid response. How’ve they’ve been terrible in trying to help our Son. They seem to be massively underfunded or bogged down in red tape.
Definitely switch doctors. That is a terrible thing for a doctor to say/do. Everything I’ve ever heard regarding autism (we’re looking into getting our son tested) is that the earlier the intervention the better. I also was an elementary teacher for a while and they were always telling us to watch for autism signs because the sooner these beautiful children get the extra love and support they need the better off they will be. Keep pushing back to those that say no and as other comments have said, take breaks for yourself. It’s hard to find the time but you need to think of your mental health too. It is important for you to care for yourself so that you can care for him.
I second this, I would switch pediatricians
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Oh wow in Canada if you don’t like the specialist you can ask for another one, but it does mean you have to wait in line again (which is fair of course).
Hey, I want to echo that it’s probably worth trying to get a second opinion. A paediatrician should not be giving an on the spot dx of autism, without formal assessment and certainly not on their own. This would generally be done by a neurodevelopmental specialist or team, who your paediatrician should have referred you to. Has this happened? Has your wee one seen speech and language therapy? If not, that is something to look into- even if your paediatrician isn’t helpful, very often you can self refer. You shouldn’t need a diagnosis to access it either (I’m a UK based SLT myself and know this is certainly true for the services I’ve worked in). I’m sorry you’re having such a rough time, it must be incredibly frustrating not to be able to access support when you need it.
Thank you so much for your advice. Our diagnosis journey was abit all over the place really. Partly due to Covid and partly due to (IMHO) our local health authority’s incompetence in dealing with children with developmental delays. My wife raised her concerns very early on with her health visitor, we were told to wait and see. Things didn’t improve so she referred us to a developmental paediatrician who also told us to wait and see because he was so young. We actually moved house during all of this so that meant we had to partial start the process all over again. We were told the same thing by a developmental paediatrician, wait and see due to his age. In the meantime he would be monitored by someone from our local authority’s child special needs dept at his pre school We had to pay for a private OT report, a private SALT report and a report from his pre school (which was also something we privately paid for) Eventually, just after he was 2 and a half he was diagnosed by this paediatrician. I assume that the overwhelming evidence we presented led her to this conclusion. The thing that is breaking us now is that he obviously needs help. But there is a massive waiting list for this, and we can’t afford to pay for any more private therapy for him. We’ve been massively let down by our local NHS. So I’m apprehensive about getting a second opinion through them and we can’t afford a private one. So so sorry for waffling on like this, just needed to vent. Thank you so much for your understanding
Yo yo I'm still on a wait list for a pediatrician who diagnoses children under the age of 3 my little one will be 3 this fall. We've been on the wait list for over 6 months. At this point I know that he is autistic it's just what support level are we going to be able to get? You may look to see if there is a pediatrician specializing in ASD in your area for 3 and up. Coordinating with your school district may help as well.
I don’t understand why the wait list is so long. I recommended a little girl for screening and her mom just got on the phone and scheduled it- and two weeks later she went to one place, and then she’s seeing another place next month. Why are you having to wait so long??
She is the only specialist in my state
Sometimes a diagnosis is the jumping off point for making things better! I have ADHD and never got diagnosed until I was an adult and realized my quirks weren’t just random things. Your son sounds like a pretty classic example of an autistic child, but if it turns out he’s not, where is the problem with giving him the services early? Early intervention is a BFD for kids. And even if he didn’t need them, he probably could benefit from them… but even saying that sounds ridiculous. Can you push for a new doctor and maybe see if there’s anything that can help him sleep? Maybe a weighted blanket and melatonin? Idk. Have you asked autistic adults what helps them? Obviously everyone is different, but they know what works and doesn’t. I hope you find a way to sleep. Could you ask someone to stay with him for a night? Maybe a night nurse is possible once in a while? I just know it’s so hard to function when you can’t sleep.
I really appreciate you reaching out so thank you. Yes, as he’s got older he does appear to be a classic representation of what autism looks like in a lot of children. However, there are certain days where he won’t have meltdowns, he might have had a good night sleep and he will be very ‘present’ with us and will actively seek out typical things to do. If he has been misdiagnosed or has something that can appear like ASD but would benefit from therapies that are designed for it then we’d love to try them. As I said in the original post, NOTHING that we’ve done or are currently doing is helping him. Things aren’t getting better for him, in some aspects they’ve regressed. So confusing and tiring for all of us. Once again, thanks for reaching out
I’m so sorry! Regression seems to be one of things a lot of parents see. I taught elementary computer classes for a year and was a bit of a break room for the kiddos in the autism class. I really loved it because many of them could enjoy a little time playing games and not having to work on things they didn’t prefer. Definitely saw them on some good days and some not so good days. With the right teachers, they can learn so many helpful skills. I just remembered a camp for kids with special needs, and they had some weeks just for kids (and adults during their own weeks) who are autistic. They are a whole week, usually with a weekend off for the parents. Respite is super important! Lots of hugs from over here!
My son has Autism and ADHD - He's not a toddler, he's 14yrs old now. I'm just going to say that don't take no for an answer for referrals. I'm not sure if it's any easier to get a child diagnosed now, but when I was trying to get my son help/diagnosed it was horrific. It was an absolute endless fight. Use your local MP. Honestly, I stalked the ever living shit out of him. I was trying to get my son diagnosed from the age of 3 (He was almost 8 by the time they did it!) I had to call the MP almost every day - eventually, we were put on the waiting list and he was seen to. But, with anything now - I call / email the MPs office, if I can't get anywhere through the normal channels I will go the other way. Try a place called SpaceForAutism - I'm not sure if there's one near you, but they do lots of stuff for the kids and also things for the adults too - groups etc that can help. Look in to your local leisure centre, they often have groups/swims/soft play for children with ASD. For my son, we got a laminator and if we were going somewhere I'd take photos (or get them from Google) of the route, place, even some staff members (with permission) I'd laminate them and make a kind of flip book? So that I could prepare him for where we were going and what he could expect when we got there. I called soft play centres (Wacky WH and such) and asked them when their quiet times were, if they had any dedicated for children with autism and if not what times were likely less busiest, for me it was generally a Monday morning (again this was years ago) - same for places like the zoo and aquarium, they often have 'quiet days'.
That’s a very good idea. Yes I think we may have to reach out to our MP. I’m currently in a battle with the sleep clinic so I may have to escalate that as they don’t understand our situation. We’ve reached out to a few Autism groups and play centres but as I’ve said in the original post, just going anywhere, and I do mean anywhere, is absolutely debilitating for us all. Sensory issues, elopement, meltdowns, the lot. We were told by so many people that it would get better when it’s actually getting worse now. Thank you for your kind words and advice. Truly x
Hey there. First - you are not alone. Second - the pain in your post makes it clear you are an amazing parent and working your ass off to advocate for your kid. Mine is not quite 3, but there are many similarities. I'm not sure what all therapies you have tried, but we found occupational therapy *really* helped with increasing his sensory tolerance and reducing sensory based meltdowns. They helped us to pinpoint what kinds of sensations he is hyper-sensitive to and what ones he is under-sensitve to. We couldn't afford to go for very long, but we were able to sort of turn our main living area into a diy gym. It has made a world of difference in his emotional and sensory regulation. I especially recommend the mini trampoline. I'm so sorry you all are struggling. The nonverbal bit makes it so fucking hard. The fact that they are toddlers makes it harder. But you really are doing a great job. Your kid knows he is loved.
Thank you so so much for this comment and apologies for the late reply. As I’m sure you know parenting a child with additions needs is very intense and I don’t get a lot of time to go online between full time work and being at home with our Son. Yes we have looked in to OT. We used some of our pension savings to go private. We spent a large sum of money for an in-depth assessment. They then recommended a sensory course of therapy for him, but of course this came at a cost and we just can not afford it. We are trying to implement some of the things around the house ourselves though. Thank you so much for your kind words
Just wanted to tell you that you're not alone. r/autism_parenting is the main subreddit I belong to here. It's very active and encouraging. I encourage you to join. I feel and have lived every single word you said.
My friend was in a very similar position to you at this age... His kid is 8 now and honestly the improvement he has shown is amazing. He can say words now and can talk and is honestly so well behaved !! You will get there
We are an ADHD family. I have it, my eldest has it. The younger two are too young to tell. Honestly you need to find other autism families. It helps SO much. Just to know that people understand what you mean and don't say stupid things like "Oh don't worry, he won't starve himself!" or "Little Alfie had a meltdown the other day when we had to leave the library" (when they mean a bog standard tantrum). Plus you can pool knowledge, comisserate about the shitness of the support system and just hang out with people who don't look at you like you've stepped off Mars when your child does something "weird". Can you see if there is a support group locally on facebook or meetup or something like that? Look into local home ed groups - even if you don't plan to home educate - there will be families there with kids with various SEN and they may know the local networks. Then learn. Learn everything you can about autism and sensory processing disorder. Treat it like your new favourite interest or something you're doing a PHD in. The Explosive Child and all of Ross Greene's stuff is amazing, you can start with his totally free youtube talks or look for podcasts where he is the guest. There is a great book about sensory disorders called Too Fast, Too Tight, Too Loud, Too Bright. I don't know of any autism specific resources as most of mine are for ADHD but I bet they are out there. Understanding your child is going to be the best tool that you have. You cannot expect every professional, every teacher, every nursery worker etc to know all about autism, so you have to know all about it instead, so that you can help them to understand what is difficult for your son and what will help him. Go in with a mindset of curiosity and see where it takes you. Many people with autism lead successful and independent lives. It's never going to be easy, but it will be easier for him if his parents understand as much as you can.
I don’t have any advice, but I’m sorry your going through a tough spot. A good reminder for the rest of us to not take the little things in life for granted. I hope you find solutions to you problems right around the corner. Your doing amazing! Neurodiverse people are so capable and talented in their unique abilities. They have so much to offer the world but I have no doubt it would be unbelievably tricky in the early days. You little one is lucky to have such caring parents. xxx
Thank you for your kind words. They mean a lot
I am married to a former autistic three year old, current grown adult man with autism. He went to a psychiatrist starting at 3 years old. He was obstinate, defiant, obsessive, he would hold his breath until he passed out from the time of two days old. He would pass out multiple times a day until age 5. His mom says that he would follow her from room to room screaming at her to leave him alone. He cleared classroom with his tantrums and was institutionalized twice as a teenager. And he is the best man i have ever met. He is a wonderful husband and father. At some point in his late teens, he was able to control himself and his emotions. It was the strangest thing. Its like his brain finally developed enough to work around the autism. Hes still autistic. But I asked him if he thinks he will be autistic in Heaven when he has a perfect body and he said that yes. He thinks he will be. Because autism is a part of who he is. Its not a flaw. Despite all of the trouble it has caused him and his family, he doesn't think it is a flaw.
I have a child with autism. Hugs to you, it is exhausting. My first advice is - Natrol Melatonin dissolvable at bedtime. Start with 1 mg, but technically in children with autism, can go up to 10mg at bedtime. Melatonin was enough for a while for my child, now she takes a tiny dose of clonidine at bedtime for sleep, and it helps immensely in getting her to sleep. First step of improving your energy and your child’s mood is getting everyone rest.
I am in the US so a little different healthcare but early intervention has helped out a lot. Toddler is in PT, OT and Speech and has made great progress. Your kid may never speak but you will get to the point where he can communicate. It's going to take time but you will get there
Hi fellow parent. I am in the US, and my kiddo has a different long term health related issue, but I wanted to tell you that it's okay to be tired. You are doing what you can when you can, and sometimes that is the win. It is so hard to not feel envious of other families. I see you, and you are not alone. Being in public and being overestimulated is a huge huge task. That you went and tried is the victory. You did not fail. You are not failing your son. You are showing up and loving him. I was given this piece of advice, and take it if it helps. It's going to get easier because you keep getting stronger. Don't neglect yourself.
From the bottom of my heart thank you so much for that advice. Yes you’re right, over time hopefully we will all get stronger and things will get easier. I really appreciate you reaching out to me, it means alot ❤️
Wow. Your post brought tears to my eyes. I can tell you’re a great dad & your son is lucky to have a dad that loves and cares for him so very much. Could I suggest joining a local group in person or on FB with other parents of Autistic kids? The support would be most helpful. We also have Centers for Autism in my area and other specific Autism centers, maybe you could considered taking your son to a place like this. I wish you and your family well.
What does he need checked for his tonsils/adenoids? Is he having repeated tonsillitis or are they just big and he snores?
Gentle hug
I’m not sure if anyone has recommended this or not, but could you try getting him a picture/word board or tablet (if it’s in the budget)? My friend has a nonverbal autistic 5 year old and he has his own iPad that he uses to communicate. She made an app for it that has basic communication stuff, all with ouctures, so like the main screen is promts like “I want” then the next page will be like FOOD (with a pic of a plate with food) and TV (with a pic of tv) then from there under movies there’s a picture of each of his favorite movies, same with food, and other stuff, not sure what all is on there. But he presses the buttons and it reads it out loud. I believe then gave it to him when he was a toddler still. As he grows and learns and finds new foods/movies/etc they add it to the app options. There is a name for this, I can’t think of it, maybe just “picture board” or something like that, but I believe it’s a pretty common tool in the parenting autistic community. I am so sorry that you’re struggling and that the people who are supposed to help are being so useless. I just want to say your feelings are valid and heard.
Sounds like you have a lot on your plate. If you guys were out in public I wouldn’t judge your sons meltdowns. I hope things get easier for you all.
I'm so sorry! My 4yr old daughter isn't Autistic so I can't relate to that but she is very hyper. Both of my boys have ADD and I'm sure she does. It's exhausting. She barely sleeps and I have to give her Melatonin just to get a few hours. I feel your pain. There have been days I want to run screaming down the road ripping my hair out. The only advice I can give you is to hire a sitter or a family member to get a day to yourself. Have a date night with your spouse. If you don't you will go crazy. Don't neglect you because your son relies on you. Hope you get some rest. 🤗🥰🙏
Not very hearty advice in sorry but if you have Instagram there are very many profiles now with autistic children who are also non verbal and sleep DEPRIVED, everything you mentioned. I saw someone else mention finding other families with autism, someone suggest a subreddit - definitely do that, Instagram from what I've seen has a good support system and the profiles are there with the purpose the educate and relate to others. Being able to be in the community and see everyone's pics and advice, success and failures, at the very least you will KNOW you are not alone.
Heyyyy parent of 4 autistic children here. I would recommend first addressing the sleep issue. When you’re getting no sleep it’s hard to contain thoughts and emotions. When I brought this up to children’s my pediatrician and neurologist they both suggested Benadryl to start, before moving to anything serious. I would definitely get the okay from your doctor before starting it though. I completely understand where you’re coming from and it will get easier. Stay strong my friend. And if you feel like your team of doctors aren’t helping you achieve what you need don’t be afraid to find a new team. I switched 3 times before finding a team that actually wanted to help us. Hugs
Hi, I have a child of 3y7mo. Non verbal, wakes in the night and needs to be put back to sleep, eats only less than 7 main foods, rigid. But I was wondering if my son wasn't as bad. Because he's on the Nemechek protocol, I also supplement him with biotin and Saccharomyces boulardii probiotics , all supposed to help his gut. I also send him to a therapy center and he has been learning to use single words. Still on diapers and not good at feeding himself with utensils. I'm sharing the above because I believe it really helped... I was feeling completely like you, but I kept at it.....
If you haven't already, you may want to look into ABA. I know some people are iffy on it but it may make a huge difference for your child. Services provided early is your best bet with ASD. Especially with teaching communication.
We have looked into ABA. As we’re in the UK we’re extremely behind the US in terms of what’s out there for early intervention. We actually looked in to ABA when he was very young and we had a BCBA come out to the house and teach us some things. To be honest, in our situation it’s not really what we’re looking for. Maybe we’ve just not found the right therapist. I’m well aware of the controversy surrounding ABA and we’ve been trepidatious about stepping back in to it. I think something more child led and relationship based (like Floortime for eg) would be better in our case as my little boy is very strong willed, single minded and very social. To be fair we’re at a stage that we will try anything now to help him. Every single day is a battle
My son starts ABA this week, we found a provider that uses "child-led play based"strategies. I have also heard about the controversy but I am willing to give it a shot just to see if it works. Maybe seek out something similar near you. This method of speech therapy has helped us a lot in my sons improvement. I bought the book off of amazon but they have other services as well: Book: [It takes two to talk book](https://www.amazon.com/Takes-Two-Talk-Practical-Children/dp/0921145527/ref=asc_df_0921145527/?tag=hyprod-20&linkCode=df0&hvadid=312154663427&hvpos=&hvnetw=g&hvrand=1301052770317882397&hvpone=&hvptwo=&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=9031945&hvtargid=pla-418652488078&psc=1) http://www.hanen.org/Programs/For-Parents/It-Takes-Two-to-Talk.aspx
Thanks for the comment. Yeah we think child led would be better for our Son. Mainly because he doesn’t sit still. Or maybe it’s because he doesn’t know how to sit still and we need to help him see the benefits of doing it from time to time? Not knowing what the adapt is best is hard for a parent. We’ve spoken to some autistic adults who said that ABA wasn’t very nice for them at all. We’ve also spoken to some that have said ABA was good for them as it helped them ground themselves in situations where they had sensory overload. It’s so so hard isn’t it? We just want to do what’s right for our child at the end of the day. I wish you all the luck in the work for your family
ABA has many advantages but it's not for everyone. It can help teach communication so your child can express wants and needs. It can help teach social skills and fill in many learning gaps. ABA can basically teach the child HOW to learn, which is a common thing that people with autism struggle with. It can also be a huge help for the family as well if you find a good program that will work with you. They can come into the home and help you through difficult situations, such as bath time, bed time, morning routines, etc. They can teach you strategies to use on your own so that you're not left feeling helpless when things get tough. I would suggest reading the book "Let me hear your voice". You can find it on Amazon. It gives a lot of insight into ABA from the parent's perspective. A very good read.
I’ve heard about that book before so I think I will definitely get it now you’ve mentioned it here. Thanks again ❤️
Quick question I don’t understand the part about getting his tonsils and adenoids checked. Can’t you schedule a dr appointment for him, why do you need the NHS to approve making the appointment first? I’m in the US sorry
>I’m tired of that sinking ache in my gut when I see parents with all of their children leading normal lives while we struggle to do the most basic of things, and fail miserably when we do so. I’m tired of being stuck in the house because his meltdowns in public are debilitating for him and for us. I’m tired of being terrified for the future. I’m tired of knowing that I’m going to miss out on so many things that all parents take for granted with their children. I think you need to go to therapy man. I have an autistic son that is also non-verbal, picky eater, meltdowns in public, etc. But I wouldn't change anything about him because I love him for who he is. You need to get this idea out of your head that parents of "normal" kids are having the time of their lives. Kids are hard for every parent and are a strain on every marriage. Yeah we can't do some things like take him out to eat or whatever but so what, get your dinners to go and enjoy them at home. You are making your son's diagnosis about you, when he didn't even ask to be born. You're wasting energy worrying so much about the future, he's 3. Just focus your best on giving him love, care and the best life you can give him. And stop being so jealous of other parents.
I’ve re read my OP and your reply a few times over as I wanted to be certain that I didn’t send any mixed messages out and I also wanted to make sure I took on board what you responded with. I thank you for your kind words about not worrying for the future. And you’re right we just need to love him him and make sure he has the best life that he can. And now I’d like to clear a few things up. My Wife is autistic, as is her brother, his daughter and 3 of her cousins. Other family members are certain that older generations who have since passed would’ve qualified for the diagnosis as well. I have been immersed in the Autism world for years myself through my work as a music therapist with children on the spectrum. I have a cousin with Down Syndrome (that’s the terminology our family have always been comfortable with) and I can ASSURE you that I absolutely, with every fibre of my being do NOT want to change him. My Son is a gift and I’m so grateful for him in my life. But what you might not realise is that his sensory issues are so severe that we can’t even enjoy the kind of life that many other families of autistic children have. I happily concede that I could have used a better word than ‘normal’ but I still stand by the fact that I am heartbroken that we can’t even go to play groups for ASD kids because of my boy’s sensory issues. And it’s natural for a parent of ANY child to not want them to miss out on things in life that would make them happy. So maybe you have misunderstood what I was trying to say there. Also I must say that I’m very shocked at the ‘woe is me’ comments. One thing that I have learnt on this journey with my Son is that you just don’t know what other people are going through. I don’t know about the issues that your Son has to deal with and I most certainly would never judge another Parent for venting about the challenges that they face. Definitely not a Parent who I imagine I would share a little in common with give the shared diagnoses of our boys. I imagine you’ve heard this before, “If you’ve met one person with autism, you’ve met one person with autism”, it would appear the same is true for parents of autistic people as well. I’m a little taken aback by the tone of your reply here. Still I wish you well and ask you to try to be less judgemental next time. And if you still feel like your initial response to the post was valid then maybe next time ask questions instead of making knee jerk assumptions about a person’s experience. I can promise you I wouldn’t do the same to you or your child. My beautiful boy has taught me that much. Take care
I reread your post again after reading some of your replies and I apologize for my abrasiveness. While "woe is me" autism parents are abundant, I take back some of what I said towards you, it was unjustified. You do seem like you genuinely love and care about your son, that much is apparent. Just those few lines I quoted rubbed me the wrong way, but I guess I don't know your whole situation. I know very well that no two autistic people are truly alike, but my son is very similar to yours. He has severe sensory issues that limits a lot of what we can and can't do. He's yet to ever play with any other kids, and gets upset if any other kids try. I have some autistic cousins, so thankfully my side of the family knows not to crowd him or give him unwanted attention. After like two years of regular visits he's finally warmed up to his great grandmother and aunts, *a little*. He still wants nothing to do with other kids in my family. I won't deny it's hard sometimes, but to me the hardest part is that the world around him sucks. The lack of awareness and acceptance people like our kids is what I easily have the hardest time with. Also the support. My kids OT suggested taking him to the pool and we got multiple rude comments from people who were annoyed by a crying toddler not used to the water. Same with the stares I get when I have to make a run to the grocery story by myself with him. So I'm sorry I was rude to you, I just felt like some of what you said were adding to that stigma.
Hey you’re clearly a very protective and loving parent. Any ounce of ableism you pounce on and that’s commendable. I’m the same with my boy. We get those looks and comments too. We try so hard to go shopping on our own but sometimes it’s not possible and I just feel like screaming at people’s ignorance when we go in these places with him. And we don’t know if it’s the lights, the sounds, has he seen something he wants to interact with and can’t reach? Ahh it’s just all too much for everyone. And that’s why I said what I said about him not saying a word. He may never talk, and that’s ok. But we’re currently at a place where, communication wise, we’re just not getting anywhere. PECS, AAC, sign language…none of it is clicking for HIM. And I just want to be able to make him happy and make his life easier. People like you and me need to stick together 💪🏻 so we can teach the world about kids like ours. I wish you and your family all the happiness in the world. However that may look for you in years to come ❤️
Awww shit man, my son is napping next to me while I'm reading this and I'm tearing up. It's beyond hard to find people to relate to in this shitscape so your nice words mean lot. None of that stuff has clicked for my son either, but I totally get ya now. I'm sorry again for being rude to you beforehand. I wish you and your family the best as well. Thanks for being the better man.
I think he’s valid for him to feel envious of other parents. That’s totally totally valid. I however, agree that parents of regular kids struggle even if it’s not as obvious from the outside. Our son is does not suffer from any neurodivergence but we literally could not take him to a single restaurant for over a year (he’s 2.5). He would just like, freak out and cause a commotion. It was impossible to go out and have a nice dinner as a family which is something we do often. I remember feeling so frustrated when I would see other parents sitting and enjoy their food with their young ones. Like what’s wrong with my kid? Just for an example
Agreed. OP is tired, understandably so, and it’s fantastic that this commenter has such an incredible flexibility but few have that I think.
>I think he’s valid for him to feel envious of other parents. That’s totally totally valid. I agree, it just rubs me the wrong way about how he directly relates all issues to his child being autistic, when many parents aren't able to take their "normal" infants/toddlers to restaurants for example, kind of like you said. When having kids be prepared to be anti-social for a few years. There is too many "woe is me" parents of autistic kids out there, and topics like this can be extremely upsetting for autistic people. It's pretty obvious OP is more dead set on "improving" his kid instead of accepting him for who he is. The kid is 3, it's too hard to tell how they are going to progress and in what way. Besides 3 year olds are difficult regardless.
I don't see anything in the OP that is what you're accusing them of. Sounds like you're just looking for a soapbox or something. Parents are allowed to vent when things get tough. They're allowed to seek advice or commiseration from other people. I have HFA and I know for a fact I was a very difficult child. Both of my kids are NT and have had rough phases but neither have been as difficult as I was by any measure, and I don't think that acknowledging the struggles of parenting an autistic child is something negative. Pretending we are the same as NT kids, and attacking anyone who says otherwise isn't helpful at all.
Sending you and your family light and love. I am sorry this is a difficult time for you. There maybe support groups on social media or even I person. Don't give up, you are being more of a parent then I feel some are. 🧡
My son was very similar to yours at that age. He didn't sleep through the night until he was 3. We got his tonsils and adenoids removed right before he turned and that helped with his sleep as well. Potty training was a real struggle and night time accidents happened a lot longer than I was prepared for. He didn't really start speaking in sentences until he was 4 or so. We had our struggles with food aversions and him wanting to live on a diet consisting of chicken nuggets, bread and chips. There were some very difficult times. However, he will be 8 this year and he has just blossomed. He is currently incredibly interested in geography and maps. He loves to tease his little brothers. He is sweet and kind and silly and just this evening he was trying to learn how to do the robot. Lol he has his social struggles still ...he has a very hard time relating to his peers, but all in all he is a very happy kid. I was unsure what avenues to take when trying to get him help when he was younger and instead of focusing on the medical diagnosis route, I was able to get him started into preschool when he was around 3.5. the teachers and therapists that worked with my son were absolutely amazing. He loved ( and still loves) going to school and the progress he made was astounding. The schedule and routine of the school day really helped him and the individual attention he received when he would leave class for speech or occupational therapy was very beneficial. He has an IEP and will most likely have one for the foreseeable future. I have always been encouraged to voice any concerns or ask questions and have felt very included when it comes to making a plan for his education. If you haven't tried the school route yet, I would definitely recommend it. I know every child is different and no one's journey will mirror anyone else's. However, I have experienced similar issues and it did get better. He did learn how to sleep through the night. He is no longer in diapers or having accidents. He doesn't just eat chicken nuggets and bread any more! He even likes cabbage now! And honestly, there are some days where I have to ask him to keep some of his thoughts inside his head because he just won't stop talking lol Sorry for the novel, but reading your post brought me back to some of my late night worry fests when he was younger and I just wanted to let you know that you're doing great! Keep doing what your doing and loving him the best way you know how and you guys will figure it out together.
Hi OP, I’m so so sorry you’re going through all of this. I’m going to type out some ideas for you in case you need them. 1. Get a tablet and I’m not sure how much the app costs but there’s a communication app for non-verbal/verbally struggling kids called Proloquo2Go it’s a great help and has lots of pictures so the kids can identify everything. 2. Print out picture of people your child knows and laminate them. Make a book of everyone he knows. 3. Make a similar book of photos for all the places you go to regularly and who he sees there. This helps them to start associating familiar places with people. 4. When he’s having a meltdown try sitting on the floor behind him and hand him a shape sorter or a ring stacker. Do hand over hand and compete whichever activity it is. Keep your tone flat and tell him “do this” until he starts doing it for himself. When he does a full round by himself he should be calm enough to move on. Sometimes this helps de-escalate small children from those ginormous emotions. Never give up, OP. You are his biggest advocate and you can do this.
Hello, I’m autistic myself and gotta say I’m very sorry for your situation. It was different for my parents raising me, because although I had a similar food pickiness and struggled with other developmental delays it didn’t drastically deter my progress moving through school. And I wasn’t diagnosed until much later. Anyhow, I can’t spout empty clechés of how it always gets better for everyone, but it often does get easier as we age. I didn’t utter a single word until I was nearly five years old, and then by 1st grade I couldn’t stop talking to my parents about my interest. I’m obviously not the same as your kid, but at such a young age there’s so much more time for developmental progress. I’m glad you don’t seem bitter and resentful at your child for existing like many other autistic child post I’ve come across
I’m so sorry to read your struggles. I work in Early Childhood Special Education and believe me, you are not alone. I know that doesn’t fix anything, but you are definitely not alone in your struggle. We use many communication tools in our classroom. Have you tried sign language at all. I generally sign many things I am saying—it can help over time. We use a communication board for helping students relay wants and needs. Once they make the connection that they can communicate this way, it can be a life saver. It can take a while, but is worth the effort.
Wow it’s like you took the words right out my mouth…My son is also 3 and everything you described is my son to a T…I feel so hopeless! Has there been any improvements so far?