Have I Made The Right Decisions?

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My daughter April was diagnosed with Aspergers Syndrome when she was fourteen. It wasn’t much of a shock; she’d always been so different growing up so I knew there was something strange which is why I took her to the doctors to get the answers so I could help her.
Since her diagnosis life has been hard and I’ve had to adjust to so much. April is twenty two now and will only eat certain foods and drink certain drinks. She won’t eat anything new in case her stomach disagrees with it and makes her sick. I think she’s a little underweight where she doesn’t eat enough food. She drinks fruit shoots and that’s it, no orange or water which worries me. But I don’t know how to get her to eat or drink anything else. She keeps a diary and inside the diary she writes down how much she eats and drinks a day. She has about nine to twelve drinks a day and has lunch and dinner but no breakfast. Most of her meals are small such as spaghetti hoops or tinned meatballs in gravy. She’ll join us for roast dinners on Sundays but doesn’t have much.

April struggles with speech and communication. She doesn’t like talking to anybody, once she used to open up to me about things but now she doesn’t speak much. She finds it difficult to express herself, how she’s feeling and what’s on her mind. April never had one friend when she was at school, I took her out of school because she was finding the bigger building and harder work too difficult and she was being bullied. I taught her myself from home.

April struggles with OCD and obsesses over certain things. One of them is health and disease, she used to look up health continuously every day and would then worry that she had what she had looked up. She had headaches, stomach and chest pains and thought she was going to die. I took her to the doctors and she was tested for all sorts but taking her for tests made her poorly, she passed out at the doctors and at the hospital where she had a severe panic attack every time where she would shake and gasp for air like she couldn’t breathe. This lasted for only a couple of minutes but affected her badly in the long run. Luckily all the tests came back negative and as I thought and had hoped, April was and still is healthy and fit. But mentally she is suffering badly.

I put an internet protection program on her laptop blocking everything to do with health and diseases, so she has mostly got over worrying about that. She still worries about mine and her dad’s health but not much I hope. The main thing is she can’t look it up now and get worked up. April still gets the pains but this has been put down to anxiety which she was given medication for but she never took it so we’ve fallen back on different ways to calm her down. This is anything from listening to music to reading or simply doing a jigsaw puzzle.

April is still very young, physically and mentally. She still looks like a schoolgirl and acts more like a child than an adult. I haven’t encouraged her to grow up to be honest. I don’t think she could handle the adult world, when she was at school a lot of the children used her and were cruel and I think that would happen again if she tried to get a job or do most things herself. To be honest I don’t think April even has thoughts of anything like that; she’s happy playing with dolls and living with me and her dad. I don’t think it would be a good idea to give her anymore pressure.

A few years ago April’s father nearly died; unfortunately she was there when she saw him have heart failure. The paramedics managed to resuscitate my husband and he’s been good ever since now that he’s on meds to help him.

April wasn’t the same after that. She didn’t like the house we lived in, it upset her because it reminded her of what had happened to her dad. She couldn’t settle so we used all our savings and bought a house somewhere a lot greener and far away from where we had lived before. It cost us everything but April had to come first so we did it.
However it helped her but only so much. I saw the other day that April was talking to herself, this was at night time and I heard her in her bedroom. She was sobbing saying that she didn’t want me and my husband to die and leave her. She said she could remember the horrible noises daddy made when his heart stopped… Her memory has always been very good. She’s got a photographic memory and can remember things from her childhood that I had previously forgotten.

But her worrying now is getting out of hand. She’s depressed and I don’t know how to help her. She won’t talk to me or her dad. She won’t see a medical professional because it causes her panic attacks. I even paid for a therapist to come to the house to see April, but she sat there pale and as still as a statue she never said anything. The therapist came for six weeks before I stopped the visits because they weren’t making a difference. If anything it made April worse.

I’m at a loss of what to do now. April is mine and my husband’s world and we’re very concerned for her. I feel responsible; maybe I didn’t get April enough help in the beginning? My husband and I have done our best to understand Aspergers Syndrome but on the grand scheme of things we know very little about it which is why I am here now.

I need help and advice for April. If you have experienced this or something similar then please get in touch because I really don’t know what to do now. I fear April is going to get really depressed and having been there myself I don’t want that for her.

I’ve always tried to do my best for our only child but I feel like I have let her down now. A mother should be able to help her daughter and yet here I am now.

Thank you.

You've done such a lot for April and have shown a commitment and compassion that not all parents have. Thank you!

She clearly has anxiety issues about you or her dad dying. I'm so glad your husband survived the heart attack and hope he will continue to have good health for many years to come. Since she is largely in a child's world she naturally worries about what she witnessed that day and thinks too much about health and mortality.

The best thing to do for her is keep her occupied with the things she likes best, to keep her mind from venturing to those obsessive thoughts about health and medical issues. I do not think you've made any wrong decisions and did right by limiting her exposure to triggers, namely medical worries and hypochondria.

Which special interests make her the happiest? Apart from jigsaws does she enjoy drawing, painting etc?

I'm a bit concerned about her food pickiness, which is not at all uncommon on the spectrum. Perhaps you can look up some nutritional info online. See where the foods she likes best and also have high nutritional value coincide. There are very good powdered supplements available which can ensure optimum protein and mineral intake.

Im glad you took her out of school and taught the rest of it yourself; NT kids can be very cruel. I wasn't bullied too much but after I was finally diagnosed at 45, guys who at school with me came forward to apologize to me for their behaviour when they were in high school.

Thank you for replying. My husband is much better now thank you. His meds keep him fit as a fiddle so that's been a worry off all our minds since.

Putting the internet safeguard software on her laptop was a life saver. April still worries now, but nowhere near as much as she used to. She no longer thinks she's poorly or dying which is excellent as at one point that affected her so badly she wasn't eating or sleeping. I'm pleased to say she hasn't been like that for a long time and hopefully won't be again.

I've tried explaining to April that me and her dad won't be going anywhere for a long time but she goes quiet and doesn't speak so in the end we stopped trying to convince her as we weren't sure if it was doing any good or making her think about it more.

April likes art, she spends a lot of her time drawing pictures usually of animals or of her, me and her dad which we then have to hang on the fridge. She usually does art in the morning and a jigsaw after lunch. Some days she might listen to music as well, usually a Disney CD we got her for her birthday. But that depends on how she's feeling.

She keeps busy most days but sometimes April does go through brief spells where she stops and stares in to space. Next time I see her do this I'll encourage her to start colouring or to make another jigsaw to stop her from worrying herself.

April's food pickiness worries me. Thank you for the advice, I've made a note of this and will Google it in a minute.
She definitely needs some sort of supplement because when she does eat she doesn't have much. When we eat a roast she'll eat the meat and carrots but that's all. She doesn't eat broccoli or any other vegetables. But hopefully I can get somewhere now and help her a little more.

So am I. April is a very sensitive girl and I felt that it was duty to get her out of such an unfriendly environment. I'm glad the guys at your school apologized in the end. It shows they did care and weren't all bad.

Thank you so much for your help. This has been a great relief for me and for my husband when I tell him tonight. I can see there's a lot more to Autism than I first thought. I will do some research and hopefully get a good plan and routine set up for April. Is it ok to come here again to let you know how I get on?

Yes of course, please keep me updated on her and your progress. You should find WP quite an informative resource, as the site covers pretty much most issues which those on the spectrum, and their families and friends, might encounter.

With such great parents, I'm sure April is going to be just fine. There are people on here whose family experiences haven't been as good. I've been one of the luckier ones.

I am on the committee of our local autism group in a small South African city, and so am acquainted with some females on the spectrum who are a similar age to April. As long as they can enjoy their special interests, and are not unduly stressed, they cope well and can even do a limited amount of socializing.

All these are merely symptoms. What you should worry about is actually something entirely different, something that you have not properly worked on with your daughter. And that is: UNDERDEVELOPMENT. Your daughter's problem is that she hasn't developed enough connections inside her brain.

(I am sorry, I wrote a separate message on autism in girls, which I am about to post. I have to reply to your message first, because I don't want you to think that the other message is related to your daughter in anyway.)


The correct verb is not "to get," but "to give." It's not your fault, though. None of the doctors/psychologists you have talked to, had a clue about autism. You were misguided, like millions of parents out there. I am afraid to say this: they made their money, you are left with your daughter's problems.

Let me show you a video I recently made, for/with my son.



Could you compare how you have raised your daughter to how I have raised my son? I communicated with my son by handmaking animation video clips since he was 2.5 years old. I later drew pictures for him, basically every day, every time I needed to talk to him. I wrote down words and sentences as well. I communicated to him visual-manually. Nowadays he invents new gadgets, or designs machine/house plans on paper, on a daily basis. I send videos/pictures of his inventions to his teacher regularly, and the teacher use them to develop my son's essay-writing and typing skills. Everything is always visual-manual.

The plain fact is, while other parents were chasing after miracle cures/treatments for specific problems, I was developing connections inside my son's brain. My son did not talk until 4.5 years old. I didn't worry a bit about it. It was everyone else worrying about my son not talking. I taught my son to read early on. While other people were worried about speech, eye contact, arranging for play dates, etc. I was focused on teaching my son to read and to recognize stick figure drawings. My son was able to read simple books, before he was 3 years old. My son wrote his first computer program at age 5. If you think he was born smart and high functioning, you are wrong. He was ejected from his preschool due to his hyperactivity and lack of progress in learning.

While other people were trying to solve their children's immediate problems, I was developing my son’s skills for his long term. Guess what? After all these years, my son came out ahead of other children on the spectrum. He is in a mainstream classroom. All teachers go crazy about him. No exaggeration there. I don't struggle. I have fun raising my two autistic children. I have an easy life. My wife tells other people, if she had a choice and has to do it all over again, she would still choose to raise autistic children. Life is a lot more fun, with autistic children.

The thing is, parents focus too much on immediate problems, to the point of neglecting to develop their children for the long term.

Sure, I could tell you how to handle those issues that you have raised. But that would be like putting a band-aid on your daughter: it won't solve her real problem. She will remain UNDERDEVELOPED. She won't even be able to look at your posting here. Unlike my daughter, who was sitting next to me here and reading my writing in real-time.

I want to help. But the truth is, you need to do things that go beyond your comfort zone. Have you ever drawn a picture for your daughter and communicated to her that way? Next thing is: you need to develop your daughter from her interests. Write things down. Then, she will need to pick up some modern computer skills: image editing, sound editing, video editing, blog writing, etc. She needs to acquire skills to set up her own website or blog. In short, she needs to express herself, visual-manually. That'll help her to develop deep-thinking skills. She needs to communicate with other people, visual-manually. Truly speaking, you should lead by example: you yourself should acquire all these modern communication skills: image editing, sound editing, video editing, blog writing, etc. Learning a foreign language is also a great idea.

See, the difference between myself and other parents is: I use my hands to raise my children, visual-manually. The example I most like to cite is Helen Keller: she was deaf, mute, and blind. But she developed quite alright and became respected, worldwide. You don't need speech nor social skills to successfully develop. That's the problem of our society: we look at autism as something abnormal, so we think that verbal skills and socialization are a must for developing autistic children. Nothing could be more further from the truth. We totally forget about the case of Helen Keller. Autistic children should be developed visual-manually. Speech and socialization are totally unnecessary for the development of autistic children. Once these children are developed, they'll pick up verbal and social skills on their own, just like all other children. For wanting too much to develop our children's verbal and social skills, we actually end up putting their brains on idle mode. When you try to teach them verbal and social skills, you are actually bombarding them with pure noise, day in and day out. It's no surprise that they end up underdeveloped. Anxiety, OCD, depression, they all happen to people going through solitary confinement in prison. What our society does it to put our children into solitary confinement.

It's only after your daughter is a bit more developed, that we can come back to address her other issues, EASILY. And that, includes how to get rid of anxiety. Truly, you can get rid of anxiety for each specific issue, permanently. It's not hard. It's all about brain connection. http://www.eikonabridge.com/anxiety.pdf .

She is over 20 years old. Her brain still has some plasticity left. She can still learn. But she doesn't have too many years left before that plasticity goes away, permanently.

The key is: always develop her from her interests. For instance, my son likes elevators. From elevators, my son has learned to: read, write, type, draw, talk, do math, build 3D objects with building-block toys, assemble electronic circuits, write some Chinese characters, initiate conversation with strangers, socialize, etc. You, by suppressing your daughter's special interest in health and diseases, have cut off her chance of development. Look at the giant dewdrops on the leaf below. The leaf is your daughter's brain. The dewdrops are her special interests. Instead of taking advantage of those dewdrops to develop her by expanding connections inside her brain, you have put a hiatus to her development. See how I have worked with school teachers to leverage my son's inventions into his essay and typing skills? I still take my son out for elevator rides, regularly.




Thanks for the courage of coming here. My daughter says I am harsh. Yes I am. But think about all those people that have been nice to you. That's how you ended up with your daughter the way she is today. Those nice people can't help your daughter. They never had a chance: they did not understand autism. They gave you band-aid after band-aid. Sure, it's great to feel decompressed when you have sympathy and nice words from other people. But, you feeling better emotionally doesn't solve anything for your daughter. The only thing that truly solves problems for you and for your daughter is to acquire skills. Real skills. Everything else is just pure fantasy and analgesic. After raising your daughter for 22 years, you probably know I am telling the truth. An inconvenient truth.

It does seem your daughter started to take on health issues as a type of special or obsessive interest, but in this case it wasn't a special interest that was positive for her. There is a fine line between "special interest" and "obsessive interest." The first is positive and the second is destructive. If she is clearly happier with the health information removed, then you absolutely did the right thing and I would not allow anyone to get you to question that decision. I'm not convinced she started digging into the information because her brain was naturally drawn to it. I think it may have related to the trigger of your husband's health episode. Regardless, there is one simple test: is the ASD person happier with the interest in their life, or without? When parents close off a special interest like computer games, for example, they can see pretty quickly that it is counter-productive: their child becomes anxious and upset. It does not sound like that is what happened with your daughter when you removed access to the health information.

It sounds like her positive special interests are art and puzzles. You can and should use those to help her build further connections. I do like the idea of working with her to create a webpage or blog. Does she do any computer generated art?

My daughter (my non-ASD child) is prone to depression and anxiety and, honestly, it can be very difficult for a parent to help with those. One of the most successful things we did - that my husband did, actually - was draw her into a daily activity that she could enjoy with another person. The activity became a small lifeline outside of her depression, and she enjoyed it. She had a few of those life lines into the real world: daily cross word puzzles with my husband, weekly Dungeons and Dragons sessions with friends. Now that she is out of the depression she talks about how grateful she was for these little life lines. Outside of those, however, for her, it was mostly about having time to figure things out, no pressure. A therapist helped for while, but ran its course. And so on. For her, it was mostly things she needed to work out for herself, while staying connected through her small lifelines. Everyone is going to be different, but test out small defined tasks, and make sure there are routines in her week that draw her out a little. Engage with her in art and puzzles.

You've done a good job adapting to what you believe she needs, and giving her space and time to grow. Those are so very important. Is there more you can do? Maybe. That is hard to know, and it is never too late to do more. But to start from a place of allowing her to be who she is ... you've done the most important thing.

First off, you need to stop beating yourself up. Doctors provide so little help and guidance in these matters.

I strongly suggest you research the gut microbiome and the connection to brain disorders. The way your daughter eats, I suspect that may have something to do with her condition. Heal the gut and you may be able to heal the brain.

Hello, I come back here with the saddest news I have ever had to tell anybody.

April has sadly passed away. She died peacefully in her sleep in hospital on January 5th surrounded by her family.

This has been the most difficult thing I have ever been through and I know I will never stop loving or missing her! April was a beautiful young lady, the centre of my universe and now all I have of her are pictures and memories.

I would like to thank you for your support regarding April. Her final months were a lot happier and anxiety free thanks to your advice. So thank you for all you did for her.

I cannot begin to tell you how much this loss is hurting me and my family. We are truly devastated and heartbroken at losing our precious angel, April.

(((Belinda)))

Sorry to hear about the loss of April.

I'm so sorry about your devastating loss. Much love to you and your family.