I have three on the autistic spectrum and I am losing it

[earthmama4]

I am not really looking for advice, maybe just some validation and a safe place to vent.

I have three children on the spectrum, ages 9, 12, and 14. They are very "mild" by clinical standards, but I find it EXTREMELY challenging to parent them. The rigidity, the moodiness, the unpredictability of every waking moment of my life. I cannot take it anymore. I seriously feel like I am going to go looney if I haven't already.

Its like I have three kids walking around here lined with firecrackers, and when one sparks, it ignites the other and it just happens over and over again, all. day. long. All week long...all month long.....I am constantly emotionally and mentally exhausted with no end in sight.

I am doing everything in my power to help them. They have structure, chores, checklists, medication, and they have had a TON of therapy. DS1 just finished 6 weeks of full day treatment. He is the most severely affected. We have an in-home therapist coming soon, but honestly, nothing ever changes. It just IS. This is my life. But unfortunately its more than I can personally bear. I feel like I am an inch away from a total collapse. We have a respite set up a couple hours a week, but its just not enough. Ours was Friday night, and here I am Monday, about ready to scream and run for the hills. I have done personal therapy, loads of it. But as one therapist put it, "There is no magic bullet. You are in this for the long haul."

I have read books on autism, but there is very little out there on multiple sibling autism, and believe me, it really complicates things. I always turn to the chapter on siblings, hoping for some insight, ideas, etc, but instead I read how NT siblings can really help ASD kids learn appropriate behavior and social skills. Yeah, great, but that doesn't happen in my house. They share the same weakness, and they trigger one another over and over. Like I said, firecrackers.

Last night my 9 year old starting flailing his arms around, because he was angry at the 12 year old, who had just grabbed his arm in anger, because he was putting dishes in the sink, instead of the dishwasher when clearing the table, which is "not what you are supposed to do!" I teach them how to do things but they often forget and then they constantly try to correct and control one another in their extreme rigidity. Anyway, in his fit, the 9 year old's flailing arm hit the 12 year old in the mouth and cut his lip. He started screaming. I was in the bathroom, teaching my 14 year old how to effectively brush his teeth, since he seems to have forgotten (again) and they are getting yellow and yucky. It just never ends. Its too much.

One of my struggles is because they are so smart, it always shocks me when I *see* their delays. Its like rocket scientists who don't know how to get dressed properly. Or more accurately, only remember to get dressed 4 times a week, and the other three days show up in their underwear. I tell them the same things, over and over, and over. Sometimes it clicks and sometimes in doesn't. There is no rhyme or reason to it. I honestly think sometimes it would be easier for me to cope if they were more evenly delayed. I feel horrible saying that, and I mean no offense to those whose children are more severely affected, I know I should feel lucky that my children have the strengths they do, but its how I feel right now because the incredible "unevenness" of their delays leave me constantly confused as to what to reasonably expect of them, and constantly frustrated when they don't meet the expectation I believe them to be completely capable of. I have asked countless professionals to help me with this too, but no one seems to get it. They explain that ASD is like an equalizer on a stereo, with the bars set at all different levels. So some areas are set very high, and some are set very low. They tell me their prognosis is "good" with continued support. But what is that support supposed to look like? I don't think anyone has the slightest clue what that actually looks like in a house with three on the spectrum. I suppose our family is somewhat of an anomaly, even in the autism community. I know no one else, IRL or online, who has three on the spectrum. And I am starting to believe that one mom just doesn't have what it takes to "support" three ASD kids by herself. Life, nature, society, whatever you want to call it, is expecting far more from me than I have the capacity to give.

Thank you very much for listening.

[QueenOfTheMeadow]

Oh my! That is tough. I have three little boys, but only ds1 is on the spectrum, so I don't have a whole lot of advice. But I am so sorry that things are so rough.

[shelbean91]

I have 3 kids. My dd is nt, my ds1 is moderate/severe autism, ds2 is mild/moderate (not officially dx'd, but we're in process of the dx). DD could possibly also have some very, very slight symptoms, but is basically nt.

I know what you mean about it being 'easier' if they were more evenly or more severely affected. I've said that myself. My 8 yo in many ways is easier than my 6 yo, who is more mild. We tend to expect more then the disability is less obvious and then get frustrated when we don't get what we want. Not to mention, they don't fully 'get' what it is that we want them to 'get' and get frustrated and last out.

As far as the things you tell them over and over, do you have a schedule that they have easy access to? I know many who use PECS with great success. I haven't implemented this, but I will when school starts - I'm sick of arguing about when/how homework needs to be done and my 6 yo thrives on schedules.

The rest, I don't know. It's hard enough with 2 on the spectrum and my 1 nt, preteen, upset that 'they get away with everything'. I can't imagine 3.

[CarrieMF]

I agree with using PECS. Especially for things that are easily "forgotten" like brushing teeth. Having picture(or word) cues can help them to not forget steps.

[earthmama4]

I haven't used PECS, but I have made plenty of chart and picture cue stuff on my own. I am a preschool teacher by trade when not at home, and we are pros at that kind of stuff. But the problem is, they don't look at it. They don't notice it. They are always asking to go on electronics, and will waste the day away doing so, so we have told them they need to have their morning chores done first, and then they can have free time to do electronics if they wish. They never remember this, and every day they ask to go on electronics before they are done with the morning chores. I have had their morning chores listed on the fridge since the beginning of the summer to help them remember. I keep the language very simple and clear. I have a different one for each child because their jobs are slightly different, but I will give my 9 yr old's as an example. The list is bolded, the stuff in italics is my comments to you, its not on the checklist.

_________'s Morning Checklist

1. Get dressed in clean clothing and clean underwear. (It used to just say, get dressed, but they'd put on the same clothes as yesterday or pull something out of the hamper, so I had to be specific!)

2. Clean your room according to your checklist (its in their room and tells them exactly step by step how to clean their room. They still don't do it. They make their bed and that's it. Every day. No matter how many times I go down and look and correct them. They are always like, "Oh." Like they didn't know they were supposed to do anything else. Every. day.)

3. Fill the dogs water dish and food dish, both inside and outside. (This is very frequently left undone, even after verbal reminders).

4. Meal job (this has its own chart - they rotate unloading/loading the dishwasher and setting the table and we've worked with them extensively teaching them how to do this. I actually think I need to make a set the table chart though, as every time we sit down to eat we are missing forks, or cups or something. They don't remember it.)

5. Have a positive attitude. (this is to help avoid all the whining and fighting).

Once these things are completed, you may have free time activities.

(I also have a list of free time activities to choose from, because they have a very hard time entertaining themselves without getting into mischief, or using electronics all day long)


If they do all these things, they also earn tickets. One for each job. They also get tickets for sharing, being flexible, helping one another, etc. At the end of the week we have a "store" and they can buy things, ranging from ice cream to Lego Sets (if they save up).

Sounds great right? Counselors love it right? Then why doesn't it work!?!? Why do I have to still harp and nag and prod all morning. It takes 3 or 4 hours to get done what could easily be done in an hour or two. I left them alone about it today cause I was sick of it. Thing were quiet for a while so I went to check on them. Their beds were made, DS2 was dressed. DS1 and DS3 were in their pj's watching Charlottes Web on a TV that is UNDER the laundry room folding table in our storage room. Thats it. Pets aren't fed, dishes are sitting. They smile and say, "Hi mom." and are surprised that I am annoyed with them! ARG! This is a very, very, typical day for us.

These are straight A students! Gifted! Extremely funny kids. No one outside our home would likely know they have autism at all. Their teachers don't. And at home there are some days they do fine. Need very little reminders at all. Some days, my nine year old sets the table like a restaurant with folded napkins and the works! Other days its plates and forks. And we're having soup. And I've told him that already three times. I just don't get it. It makes me batty.

If I was rich, I'd hire a nanny to stay with me all day and just help me deal. Oh that would be sooo nice. DH thinks I should try to find an old german woman to come babysit them. Preferably a former school lunch lady who is mean and retired. We joked with the boys about this and DS one said, "Try to find one named Olga." :

I guess in a way that is the problem. I am a good mom and I am probably doing all the right things. The counselors think so. Its too much for one person. In a SN classroom they have a very low teacher student ratio, as much as one-to-one sometimes. I need that in my house. I need a couple of "mother's aides" to just help me out. Things are amazingly better when DH is home. Just having the extra eyes and ears helps tremendously. I wish he could work from home somehow. Not really possible though. Maybe I need to just scrimp and save enough all year to hire someone for summers. I don't know how much it would cost, but maybe I will look into it.

Sorry my posts are so long. Its really helping to get this all out though, and I appreciate your responses.

[shelbean91]

Maybe add pictures and a time limit for each step? For every minute they finish early (assuming it's done correctly) they get an extra ticket?

[shelbean91]

Also, maybe instead of a daily room clean, try weekly? Or just let it go? I know it's hard - my MIL will go in and help my dd make her room perfectly clean. She'll keep it that way for about a day and a half. I'm trying to get her to figure out it's easier to 'clean as you go' rather than let it become a pigsty and then do it. She's getting there.

Let them 'forget' to feed the dog - dog will be hungry and thirsty. I assume they also love and play with the dog. If they 'forget' to feed their dog, they must 'forget' to eat themselves.

I'm also a teacher - teach 30-ish 4th graders. I often wonder why I can get not only my class, but the other 3 classes (so 120+ students total) to listen to me and do what I ask, but I can't get my own 3 to do the same. I figured it's b/c my kids have had years to learn my limits and know how to push my buttons. By the time my class figures that out, they're long out of my classroom!

[confustication]

I have an 8 1/2 year old with Aspergers, a 2 year old who is in the middle of fidgnosis, and a 10 month old who is wound so tightly that we don't ever sleep- we'll cross that bridge when we come to it.

Honestly, my sanity saving solution has been to enable the oldest to succeed. She can not keep her room clean alone, but it has a profound impact on how well she functions when it isn't clean. Solution? I help her tidy it every day- and once a week we deep clean it for her so it never gets out of hand. Instead of asking her what she was thinking when she got clothes out to put on, I help her take them out the night before so they are already there to put on in the morning- appropriate season and they match (omg- the Hawiian shorts and button down shirt with striped vest over combination.... "But they both have pink!" that was the day I realized she would not be able to master clothing herself for a good while yet...)

The infuriating thing is that I have an eight year old who can read and understand every scientific book out there, but does not grasp that cleaning her room means picking the trash up as well.... I have a two year old who doesn't speak at all, but he does manage to build complex cities out of blocks.. the sort you expect from a much older child...

Oh, and the 10 month old? He is speaking in 2-3 word sentence fragments on a constant basis with a full sentence said at his brother's OT appointment yesterday.. but he doesn't sleep for more than a 45 minute stretch without waking to nurse....

Asynchronous development is the norm here.

[CarrieMF]

What are their consequences for not doing thier chores?

It sounds like they aren't doing it because they're not motivated to do it. Do they care about the tickets & end of the week store?

If electronics are something they all like, remove them from the house. once they get their chores done they can have 1(each) back for an hour or so. Then it's removed from the house again until the next day. Use it as their motivator to do what needs to be done. They won't be able to sneak off & get to it on their own if it's not physically in the house.

[Village Mama]

I get you mama! It is absolutely maddening. I had to laugh while reading your post because it is so much like our experience ( I have two boys)... what else can you do sometimes but laugh? ( and or cry!) It is just so ridiculous and outside of regular parenting. The lengths and creativity that we go to to try and help them " get it"! The day after day after day " repeat" of the most ridiculous things. You aren't alone though. Just thought I would say that.

[earthmama4]

Maybe adding pictures would help. It hard for me to wrap my head around that they can read each read 300 or 400 page book on a 12 grade reading level in 3 days with full comprehension but cannot follow a simple checklist.

The time limit thing is good and I started that this week. I set a 60 minute timer and they have an hour to get everything done once breakfast is completed. Breaking it down further would be better of course, but I don't have the ability to monitor the completion of each chore when there is three of them, plus my toddler to care for. Here's where I need the help.

They don't eat if the dogs bowls are empty. But they don't learn from that. Because every day the dog's bowl is empty.

One doctor told me that my kids can learn rules and routines, but it will just take a lot longer than another child. It might take 6 months for them to make a habit rather 1 like a NT child. Its just really, really hard for me to understand that, even after all I have learned about autism. Why can my 12 year old memorize the Guiness Book of World Records, but can't memorize his morning routine? (Actually, to be fair, this is the kid that is the best at following it of the three) but still.

I totally would love to let it go. We have been working on "radical acceptance" of our crazy life. But I feel like I *have* to teach them these things so that can be independent. DS1 will be 18 in a little over three years. I was telling my one counselor about a mom I had read about online whose ASD son plays the guitar. He comes home from school and plays for 4 or 5 hours, and then up to 12 hours a day on weekend. He is really, really good, and even getting some radio spots. I said maybe i should just do that, let them dive into their obsessions and quit trying to make them be "normal" kids. But the counselor said that mom is doing a huge disservice to her son by allowing him to forgo being a part of family life, learning balance, etc. He considered it neglect. So I have kept that in mind a lot, because I think he has a point. My boys are fully capable (*praying and knocking on wood here*) of being fully functional contributing members of society. But its not going to come naturally to them. They are going to need to be taught, pushed, prodded, rewarded, and experience lots of consequences before it "clicks". So I feel tremendous pressure to do that for them. It just wears me out.

Plus, I really do need their help. We have a six person family, we need to work together to keep it running. My kids are fairly good with analogies (which I know is unusual of Aspie-type kids cuz they are so literal, but my kids like them and seem to get them) Anyway, I drew a picture of a truck hauling longs along a highway. I said our family is the truck and the logs are all the things we need to do to get from here to there. We talked about being a "log" just along for the ride, adding to the weight, and being part of the "truck" helping to haul the load. In order for the truck to get to where its going, it needs all its parts, a good engine, oil, fuel, tires, etc. We discussed thing that might slow the truck down, an oil leak, flat tire, out of gas. We linked all these images to the problems in our family. They added to the discussion and I wrote their ideas. I posted it by the morning checklist and hope they will look at it and kind of absorb the concept over time.

Maybe I should start a blog. I apparently have a lot to say! I have already joked about writing a book on the challenges of raising three Aspies. DS2 said, "Yeah, you should call it "Raising This Kid Is A Pain In The Aspergers" OMG that cracked me up. See what I mean, these kids are so intelligent and funny. I wish they didn't drive me so batty so I could enjoy them more.

[earthmama4]

Originally Posted by confustication

Asynchronous development is the norm here.

I think I may put that line in my siggy.

Originally Posted by Village Mama

I get you mama! It is absolutely maddening. I had to laugh while reading your post because it is so much like our experience ( I have two boys)... what else can you do sometimes but laugh? ( and or cry!) It is just so ridiculous and outside of regular parenting. The lengths and creativity that we go to to try and help them " get it"! The day after day after day " repeat" of the most ridiculous things. You aren't alone though. Just thought I would say that.

Thanks you. The understanding helps more than I can say.

Originally Posted by CarrieMF

What are their consequences for not doing thier chores?

It sounds like they aren't doing it because they're not motivated to do it. Do they care about the tickets & end of the week store?

If electronics are something they all like, remove them from the house. once they get their chores done they can have 1(each) back for an hour or so. Then it's removed from the house again until the next day. Use it as their motivator to do what needs to be done. They won't be able to sneak off & get to it on their own if it's not physically in the house.

GREAT idea. I have an absolute love/hate relationship with their electronics because they are soooo obsessed I want to chuck them all in the trash and go Amish, but they cannot be beat as a motivation strategy, so they stay. I think they care about the store, but I have to keep it fresh, and add new stuff or they get bored. But you are right, I don't think it is super motivating like 30 minutes of computer time is! That is their hw motivator during the school year and it works wonders.

Thanks mamas. I appreciate having people to talk to. It really helps. I am off to check if they have done their morning stuff. If so, they get to come to the store with me. They all really want to and so I said they could if they got every detail on that list done. Heaven help me! Taking them to the store is something I generally avoid for reasons I am sure I don't need to tell you mamas! But if it motivates them, I'm willing to do just about anything.

[EdnaMarie]

Clean your room according to your checklist (its in their room and tells them exactly step by step how to clean their room. They still don't do it. They make their bed and that's it. Every day. No matter how many times I go down and look and correct them. They are always like, "Oh." Like they didn't know they were supposed to do anything else. Every. day.)

3. Fill the dogs water dish and food dish, both inside and outside. (This is very frequently left undone, even after verbal reminders).

I may have Asperger's. Don't know. Never tested. However, I can tell you what... I never did these things.

I finally figured out why.

I didn't own it. Didn't care. It's your priorities, and honestly, in my mom's house, I still forget! I just HATE being told to do stuff that is NOT important to me.

Is that psycho? Perhaps. But I don't think it's crazy.

My advice is to let the dog thing go-- either get rid of the dogs (give them warning) or do it yourself if it's your pet. Period.

As for the clean room, I never cleaned mine. My mom even took away my BOOKS (we didn't have video games or a computer) like, totally. To this day I don't know where she put them.

So I did it. I still thought it was stupid.

On the other hand, she never went through the whole thing about how you get bugs and these can live in your skin and hair and make you itch and the real timeframe for this to happen. I told her as an adult, "Why didn't you reason with me? Why didn't you explain in detail?"

She said, "Nobody needs to do that!!! Are you kidding me?!?!? Wasn't the word "bedbugs" enough?" And I replied, "I thought those were imaginary, like cooties. You're always using words that don't mean anything."

She was really insulted by that but I'm sorry, it's true.

Now, you sound far more aware of what your kids may be going through in their thought processes but my point is...

I agree take away their video games, and also, perhaps also try more in-depth explanation of why the room must remain clean. And why you can't clean it. Like no emotional stuff, just, show them your schedule, and ask what they expect you, as a fellow human, to give up to be their slave.

Seriously, if these are Auties/Aspies, they won't get insulted. I bet you a million bucks they'll ask why you never told them before.

Feel free to bang your head against the wall here.

I'm sorry, you got toughies. But as a member of society, thank you for raising these remarkable kids. We all owe you.

[LynnS6]

Summer school? Do you have enough money for a summer day camp for 1 or 2 of the kids?

Having 1 or 2 fewer of your kids around might help everyone. You said in your post that just lowering the child-parent ratio helps.

Summers are hard when you've got multiple kids home. I'm thankful I'm teaching summer school for the next 4 weeks as it got me out of the house! And I've got one supposedly NT kid (a bit of a sensory seeker, and spirited, but NT) and one SPD kid (who's a sensory avoider, and thus pretty mellow). By the end of the day, they're both feeding off each other's negative energy.

Aren't your kids old enough for a month long overnight camp?

[*LoveBugMama*]

Big, biiiiiig hugs to you, mama!!! I`m dizzy just reading your posts.


I have one child. He has no Dx, but he fits the description of a child with somewhat mild Aspergers VERY well. Very well. And I can tell you I laughed out loud several times reading your posts here. My son is soooo much like your kids!
Can you please explain to me why my 9YO, who can download and install any game possible on the computer, who understands english (we are Norwegian) 10 times better than I did when I was several years older than he is etc, can`t seem to understand what "please take off all your clothes and put them in the hamper" means?? Seriously, WHY does he have to ask me, every. single. time, "do I have to take this off, mama?" and "where should I put this shirt?" "Oh, in the hamper? Ok. What about the socks, mama?" .. Every time.

So, I totally understand that having THREE of these amazing, quirky, special, awesome kids must be really, really challenging. s
I don`t think I have any ideas other than what has been already said.

[cameliabrowne]

I consider my kids to be normal and they both do all the supposedly abnormal things that are mentioned here. And also, I did them when I was a kid too.

Both my boys are completely different temperamentally, but i could attribute all of the things mentioned here to either of them. My oldest, who is an absolute angel in temperament, never remembers to brush his teeth. I send him back to brush them every morning on the way to school. At 14 I am not going to check how well he is doing them. He would eat all food with his fingers if he could have it his way. He doesn't clean his room without lots of drama. But he is a normal kid doing fine at school and with his own special talents. He does however prefer to be on the computer to doing any of the above mentioned tasks and is smart enough to know that.

My little one has the trickier temperament. He is far more finickity than the oldest about things and gets stressed out more easily. But he also has particular outstanding talents that make up for it. And he also requires constant nagging, just like I did when I was a child. Isn't nagging children to be tidy and do things they don't want to do perfectly normal?

And if they get the opportunity, they fight with each other. Often. Sibling rivalry.

I'd like to know what it is about autistic kids that is actually different from so called normal kids, because on this and another forum I am hearing what sounds like pretty normal behaviour. Hard work, annoying definitely. But nothing that allows me to identify what is really different about these kids

[gr33nie]

Hello

I have not been on this site for a LONG time but am needing to connect with other parents who have children on the spectrum. Today, I totally completely lost it with my four year old son. As many books as we read and beliefs we have about patient and kind parenting, their constant swimming against the current can bring out the worst. I only have one child with autism and it has been a huge emotional struggle for me. I am not in your shoes but I completely 'get' how one child could set another child off and how that just layers the frustration. So, all I can do is offer you support and tell you that you are not the only one feeling like you are losing your mind. I had to call my therapist for a last minute appt. today after an afternoon in tears.

[Village Mama]

Originally Posted by cameliabrowne

I'd like to know what it is about autistic kids that is actually different from so called normal kids, because on this and another forum I am hearing what sounds like pretty normal behaviour. Hard work, annoying definitely. But nothing that allows me to identify what is really different about these kids

I think that maybe parents of kiddos on the spectrum might not have the energy to even write out the details of what is going on in thier homes.
When we say we need to remind them to brush thier teeth, it is actually so much more than that. It feels like you are starting at the beginning EVERY single day. Like when you try to teach them to brush thier teeth and set the routine, but it never sticks... after 7 or 8 years of constant coaching through every single detail it can be a little bit of a mess with your mind! But take this and extend it to every detail of the day ( add another child on the spectrum that goes in a separate direction with it!) and start with this as a baseline. Then add in whatever else needs to be done in the day, whomever you may encounter, places you need to go etc ( all of the unknown elements) and it can make for quite a ride. Normal fun outings like going to the swimming pool, or the lake, or the circus ( this is in my house anyways) are just rejected and melted down about right away and usually are a stress for everyone involved no matter how much you prep them for it. Add to this everyones own special personality...
hmm ( how can I set this stage?!) My one son will reread and obsess about one book for maybe 6 months or so. Last it was Percy Jackson and the olympians. So through this exciting repeat of the daily routine he constantly says everything in Greek which nobody understands, goes on long monolouges about each greek god ( everything you say will be brought back to this favourite subject, no matter what it is!) If I can add in the visual of him visually stimming on everything through this ( maybe waving his hand in front of his face, looking at you through one finger or trying that " crush your head" pinchy thing from kids in the hall) You watch other adults ( forget other kids!) glaze over after laughing at the strangeness of the encounter. He can be brilliant but doesn't understand his impact on others, misconstrues everyone elses intentions making for constant parental explaining and damage control, and often says things that offend other people.( please remember that this is only one of the kids! Add in another that may be running in circles, verbally making nonsense constantly or hiding under things growling at people!... if it is a really interesting day add in punching himself in the face) I have no energy right now to go into how it impacts the personal relationships in the house or other facets of our life. They are amazing kids ( they make me laugh or be in complete awe more than I cry.) but doing this day to day is so exausting. Like a hamster wheel and you just can't move ahead with the most simple things and get on with the fun stuff! It is truly a strange existence.... not normal parenting.
This was not in the spirit of being bitchy about the question... just so you know. I find humour in it all because it is actually pretty funny when you can be in the right mindframe. When you can't though and are worrying about them ever being self sufficient, trying everything available to you to help them, being asked for a million times more patience than should ever be expected of a person. Sometimes it sucks and you wish you could just help them ( not talking cure.... I mean help them in the moment in every small situation) and not feel like you are failing them ( or yourself) constantly. Like if you could just get it together, do it right, and muster up just a bit more energy ( insert superpower needed) they would just get it. And these are the high functioning kiddos. Your stress and concern and the reality of the situation is pretty much hidden from everyone else.
I get it when the OP said she wasn't looking for advice. It wasn't about the videogames or the sibling fighting ( normal stuff) , but more the underlying helplessness and exaustion in those weakened moments before you can muster up the energy for the next round. Sometimes it is just nice to know that someone else understands.

[mamaclukey]

^^^^ This..

Nothing is more frustrating as a parent of an amazingly smart and able ASD child who cannot function without loads of help in the real world, than someone saying "He sounds normal to me". I wouldn't trade my son for the world but if you don't live with it.. you don't get it.

[cameliabrowne]

Thanks Village Mama, your detailed explanation was helpful to me. I once looked after an autistic child through the IHC and he was absolutely gorgeous and abviously autistic in that he didn't talk and as much as I would have loved to hold him, it wasn't possible to make that kind of connection with him.

I guess I worry that some children who are really just Extra, may end up with labels. I'm not talking about the children who you have described so well.

I also understand how frustrating it is for other parents to take a cynical or skeptical view of your parenting, from the I could parent them better point of view and am aware that I probably came across that way. And so much information is between the lines.

Maybe I also fear that my "Extra" kid might be labelled in some way if I sought help through the health system. I know how easy it is to attract a diagnosis, and if i want that diagnosis, to take all the prescriptions. I have always sought to solve my problems outside the health system because I have very personal experience of having my body become more or less like the property of the health system, when my own attempts at healing have been dramatically more successful than anything that was on offer. So I fear diagnoses and labels, and I guess that underlay my post.

My extra boy does things in a repetitive way - it can take years to process one interest, for instance wheels, or to overcome a fear, ie bumble bees. He upsets his friends with his Extra-ness, and left me utterly exhausted by the time he went to school that I literally sat and did nothing for a year. He is bottom of his class in reading (because his previous teacher managed to turn learning into a nightmare for him). It's not that he can't read, he has just been turned off. He does absolutely amazing jaw dropping things like composing music on instruments he can't play, and is also psychic, as young kids can tend to be. Going places, like the beach or anywhere were things I didn't do unless his father present to help, as we would be there all day and unable to leave without ear splitting tantrums that went on for over an hour. I stopped going out. But he is such a cool kid in so many ways, and I like to think of him for all the amazing things he does. I fear that if I had ever sought help for my despair and frustration during his preschool years, he would have ended up with a label. But then he is growing up, six now, and things are more manageable, and we have more successes than frustrations. So I am sorry if sounded insensitive, I just wonder if sometimes kids who aren't really that far along the spectrum end up with a label that then compounds things, because as helpful as they can be, they also end up influencing the way everyone else responds to our children.
And also, the well known autistic woman who people can probably remind me what her name was says that everyone is autistic, just some are further along the spectrum.

At what point do you resist being classified? Apologies to anyone with autistic children upset by my post, and thank you, village Mama for filling in some of the details, for myself and for other mothers who probably worry from time to time.