What is it like to be a Parent of an Aspie?

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My son was not diagnaosed until he was 11y/o. He had all the symptoms/actions of an autistic child when he was 2y/o.
No one believed me. All the specialist I took him to trying to get help. He got into the major self abuse thing when he was 8-9
yanking hair out head pounding on the wall. This would always happen when he came back from his father who refused to give him his medicine. You see his father said there could not be anything wrong with his son, if there was of course it was my fault. I left the man when my boys were a 5 and 7. You see my aspie son and I depressed him. I thought that was enough and I was going to finght for my sons rights for a as normal of a life I could provide. Any way, I continued to try to find the help needed. I was at school almost ever day to fight the system that my son was not "abnormal" they labeled him at that time as a "behavior issue like he could control what was happening. His frustration on trying to get people his father, grandparents teachesrs to understand what was trying to say, langauage a large barrier. After going through the Weismann Center here in Madison they found he was so far behind in speech, finally documentation!! !!!I dont want to go through his whole life, but yes it has been challengeing.

My other son who is younger is NT. He is 16 and I think it finally has hit him that yea his brother will need our help possibly a very long time.

I hate seeing the disappointment in his eyes for not being able to do something like his younger brother, such as friends. He keeps "friends" at a distance because when he was in middle school he found out that "friends " werent really friends. They bullied him they teased him .....alll my son wanted to do was die. MIddle school was very difficult.

I must say now that he soon to be 18(in less than a week) he has grown. He is compassionate, loving young man. He has a great sense of humor, that most adults get. I had his graduation pictures taken and HE SMILED!! !! !! !!
An example, when my father died this last febuary, my aspie son would come up to me daily hug me and say how you holding up there ?

I would never never want anything different. Well I lie, I really want his life to be easier and not so frustrating for him. I want him to achieve the dreams being an actor, film director etc etc.

So that in a nut shell is what it is like being an aspie parent, for me. Thanks for asking!

You're in Madison? We used to live in Oconomowoc! We always wondered what the autism supports would offer had we not moved before our son was diagnosed.

I wish I could tell you that my son is wonderful and a gift and a joy in spite of our difficulties. It's not so much that none of that is true, it's just that I don't know him very well. My aspie, who is hyperlexic and has been reading and tlking in full sentences since he was two, doesn't really communicate at all. Well, he sometimes does, but the glimpses of the person that he is are so rare and so brief, that they just sharpen my grief. Mostly, he just reports what he observes. He is only five, so I hope this will change as he matures.

I am a very involved parent, and have been his primary caretaker Monday through Friday since he got here. (I work full-time on the weekends, when his father takes care of him). I worked very hard at attachment parenting. It wasn't until he was four that I understood why I wasn't having any fun. It is the lack of shared attention that is so frustrating. I have rarely been able to capture his interest in any joint activity. Also, his interests are very limited, as is his imagination. There are just so few moments of connection, in spite of my availability, and my willingness to play.

I am proud of my son. I also love him. I just wish he could let me into his world.

What's it like to be the parent of an Aspie?
First of all, I would like to say I just found this website and I already feel so much better reading what other parents have to say.
Eric tests everyone in his life everyday. He can be so sweet & charming, and then so full of rage and obstinance. His writing is atrocious, but he can finish a brand new video game in 2 1/2 days (& I mean pass through all the levels & finish the doggone thing!). He can make me cringe in embarassment and shiver in fear at what he will do or say next in public or at school. He can also make you laugh at all the incredible stuff he says ("Did you know white blood cells EAT bacteria??! !") He has an incredible memory, which is why he gets so bored in school. He just started 4th grade and all his classmates are afraid of him because of his volatility. He has a team of about 15 teachers and specialists at school that work with him on a day to day basis and he's made great strides since his diagnosis, but still struggles everyday.
We are learning that the normal routes of discipline do not work to control his behavior. I struggle to find the ways to make him understand why he has to go to school and sit through boring, lame classes without getting mad and throwing things at people or hitting his E.A. or screaming and disrupting class just to make it more interesting.
"We" are myself, my husband and my daughter, 12. As far as we know, we are what you call "NT's", or neuro-typical people. Of course, if you look hard enough, you can see AS traits in just about anyone. I often say under my breath, "I think he/she has Asperger's," when I observe someone acting or saying something strangely.
My single biggest fear is that he will never gain independence as an adult. I am fully prepared to care for him when he's in his 30's if it comes to it. My other fear is that he will never make and keep meaningful, sustained relationships, as he has no friends in his peer group and hasn't had any to date in all his 9 years.
My current fear is that he'll be thrown in a padded cell after seriously hurting a peer or a teacher at the rate he's going.
How do we cope? Lots and lots of humor, hugs and kisses and reminding him everyday that we love him, warts and all.

I have a joke, though it's an old one, it always makes me laugh:
Two peanuts walked into a bar, and one was a salted.

I LOVE that joke!

p.s. you're not the only crazy one.

I have just come across your site while researching Aspergers and had to jump in here to express my feelings on having an undiagnosed Aspie Son (age 10).

I have always known there were some differences in Joe's behaviour patterns and the way in which he interacts with others, although it has only been the last six months that I have been crying out for help.

Joe had a hard time at Primary school, finding it incredibly hard to make friends with his peers, although he could interact well with his teachers. He has an above average reading age and a brilliant memory.
Because of his great ability to vocalise himself and his interests, coupled with his intelligence, I was completely in denial when various teachers throughout the years voiced there concerns with Joe's behaviour and social abilities. I had the opinion that he was just a "naughty boy" and the schools soft approach to discipline was failing him on every count.

At that point I was totally naive and had never heard of Aspergers or high functioning autism.

I was a teenage Mum and had Joe when I had just turned 17, I think that this made me extra defensive of him and my parenting skills. I knew things were going wrong and I tried and so many approaches to improve his behaviour in and out of school - nothing worked.

School was a place that Joe dreaded when he was at primary level, and I was in on a daily basis talking to his teacher about his bad behaviour and looking for all his lost things. He had problems with his personal hygiene - often wetting and soiling himself right up to the age of 9 and this caused huge worries too.

Joe started Middle school last September and this was when our problems really took a turn for the worst. Joe's coping mechanisms started to shut down and he was having real trouble just to get to classes on time. His new school is pretty big, and the pupils need to move around to the correct rooms with all the required equipment. It soon became apparent that Joe was finding this extremely difficult and as a result his behaviour in school went rapidly downhill.

It started out with detentions for rudeness and being late for lessons, but rapidly became temporary exclusions for a string of bad behaviour such as disrupting lessons, hurting pupils and complete refusal to do as asked.
I was in school meetings with teachers and senior staff all the time and not once was Aspergers or autism mentioned. In fact when I mentioned the fact that perhaps Joe had some kind of disorder the Headteacher said to me that there was no way he could have since he is an intelligent boy and I would never get him statemented for special needs (he is currently receiving limited help at school action + level)

It got to an all time low last spring, his Father and I were going through a trial separation, I became pregnant with my third child (unplanned) and Joe was being excluded on almost a weekly basis, and nothing I said or did would calm him. He was having emotional outbursts in school, running from classes, swearing and getting physically violent (towards objects and himself).
I was deep in depression and could see no way out of this terrible darkness which had fallen upon our family. I was racked with guilt that my parenting skills were so lacking that I couldn't manage to get my son to behave himself at school and show his teachers respect. His attitude towards me also became more removed and his behaviour challenging from the moment he awoke until the time he went to bed. Looking back he was crying out for help, but I was oblivious to his needs and so incredibly frustrated that I couldn't even get close to helping him out of the huge hole he seemed to be intent on digging.

After months of daily phone calls from the school bearing bad news about Joe's behaviour, countless meetings to discuss ways to help him. I finally got the school to arrange an Ed Psych to assess him in school. Although her visit was short (twenty minutes observation) she pretty much outlined Joe's social problems in her report. It was then that I got searching the net for information about possible disorders, and came across a page on Aspergers. Every little bit of Joe slotted into place, there was not one part of the possible symptoms and characteristics which didn't fit. I began reading more and more on the subject and became both relieved that there was light at the end of our terrible journey and racked with guilt for all the times that I have misunderstood my own child. When I look back on the times that I have punished Joe for his actions and nagged and moaned at him for certain traits which he probably couldn't help I feel terrible beyond belief.

After a Summer break from school, and a lot of emotional healing on both our parts, Joe has returned to school happier and calmer. We have drawn a line under last year's problems and decided to start afresh. So far so good, I have has little contact with the school since he returned in September and as far as I can see no news is good news. Joe often comes out of school smiling these days and will tell me about some aspects of his school day (something which didn't occur before)

I have finally made some headway in the process of having Joe diagnosed, he has had his first appointment with our local area specialist paediatrician and had his full history taken. They have sent out letters confirming that he shows signs of an autistic spectrum disorder (although don't state which), and has been referred on to a speech and language therapist to determine his perception and get the diagnosis ball rolling.

As his Mother I feel I have completely failed him these last 10 years, and that is not an easy cross to bear... I am utterly determined to make it up to him by supporting him into his future and gathering as much information as I can to help him.

Early diagnosis = best thing ever, closely followed by rewards (stickers, time, treats etc) for behaviours you want. If you suspect, check it out. Full time support at school, Disability Living Allowance and carers allowance(£5K+ per year (not means tested) more than gets a night out each month).

My boy (now 6) was 2.5 yrs & not behaving as his peers were at playgroup. Looks average, very very clever, loving, articulate, book-lover, numerate, violent, attitude-a-plenty, defiant, unresponsive; wouldn't swap him. I went through the "it's my parenting" guilt bit and did the parenting course but he didn't respond to the methods given, and we already had a very close bond - atypical on these courses. After battles (Health visitor, GP and paediatrician) came assessment and diagnosis. (I did the tests too and found out in my 30s I'm aspie too- so that's why I'd had such a hard time!)

More battle over the standard 10hrs level of support initially offered by education people through statementing process (big research, letter & meeting with LEA) - then victory and full time support in preschool and now in school.

It's not all been plain saliling so far, (move of house & school = nightmare) but we love him to bits, try hard to ensure his little sister (so tolerant and caring, NT) gets her fair share of attention and are we willing to speak out when he's not getting what he should.

Why shouldn't he go on school trips? Of course he won't play by the general rules if he's on a separate table at the back of class. It kind of helps if the teaching assistant has good experience of dealing with autistic kids and doesn't run home crying when a 6 year old says "you're despicable". No, "informal" exclusions are not legal. To comply with the Disability Discrimination Act, school has to ensure the all reasonable steps are taken to overcome barriers to inclusion. Yes, I did write to the chair of Governors appreciating the smallest improvement in inclusion practices and things are much better now.

We don't do everything right, but we try our best in a world where guidance is sparse, support for kids has to be fought for and there's a strong tendency to cater for the majority.

Given love and self-belief, we can achieve our potential - which for many of us is quite a lot...

in the middle/frodo, i read your posts with a nodding head (and the rest of the thread for that matter!) but they certainly struck a chord. since starting pre school my son has done/said things that are pure AS. in those early days we (as most people on here) blamed ourselves for being bad parents. recieving the phone calls from school nearly every day to report yet more bad news was becoming depressing and frustrating. he had full time teaching assistance and was in a class on his own as he couldn't cope. he was an easy target for bullies, yet he seemingly can bide his time for the right (unsuspecting) time to retaliate! the school did the best they could, but as with all mainstream schools they could only do so much. he/we have been through all the iep stages and reviews yet showing great promise it achieved little. this was post diagnosis!

things have taken a turn for the better recently when he was placed at a fantastic school. they have identified many areas where he is lacking, but also the strong aspects of his character. he is only 7 but i wouldn't change him for anything! he means the world to us and his sister, who is so accepting of him (and vice versa!) the relationship with him is so dynamic, every day is a new challenge. because of this it is also exhausting! the policy of blanket inclusion to make the government look good has caused us/him nothing but heartache. he can enthuse about wind turbines, generators, water pumps until it goes dark and beyond, read really well and understand what he reads but come to writing and spelling, that's another story!

my wife swears i have many AS traits...sometimes i think she may be right!


sorry to ramble, just had to get it out-love this website-nice one alex

I agree with everything said above.

Sometimes, when we've had a bad week, I find myself dreaming again of slamming the door behind us and jumping on a plane to Africa where we could live in a scruffy, large game lodge on the edge of nowhere with a load of staff and the kids can run and explore and not be judged and graded and shoehorned into this society.

It's a dream that doesn't go away!

My twelve year old has not yet been diagnosed with aspergers and so I am still in the throws of working out whether he has it or not.

I have noticed that when he has been ticked off for something and he feels he is not to blame for it he will get into such a strop that he seems to be in a trance and not be able to hear what is being said.He also has certain topics of interest which he can talk about until the cows come home and he is very clever (comes across as being the mad scientist.)He has been bullied in various ways ie name calling,been pocked fun at for making loud noises(he has outbursts sometimes and is full on and loud.)He loves acting on stage where he excells as he can really get into the characters and is able to use his vocal volume.He feels that adults can understand him better than children as through his eyes he sees a lot from an adults angle.

I would appreciate it if I had some feed back with this as I am still wondering whether he does have aspergers, as all the signs indicate and that he is not just a strong willed child seeing red at times.

Where do I start? From the beginning and working forward is probably the best and if I sound angry..... yes, i am at times but more so with frustration and towards what has never been done, what is not presently being done, and what will probably never be done for my adult step-son. My step-son undoubtedly has Aspergers, he fits the bill. A close psychologist who has observed s-son for many years believes he exibits all the characteristics of Aspergers, and now that this has been passed on to a few relatives of my s-sons, they as well are in full agreement. However, never to my knowledge (or relatives) has ANY kind of help or assessment been sought out during any of s-son's years of life. He always looked and acted different, but niether natural mother or father did anything to see what was wrong - EVER! Mother is estranged and father is very protective (probably somewhat guilty feeling) resulting in quite a bit of over indulgence, lack of boundaries, structure, and expectations, all which are of no benefit to any child.

I married a man 5 years ago who has a son now about 42-43 years old, we'll call him "T". "T" has always been described as "different" and "marches to the beat of a different drum". It didn't take long to realize "T" was undoubtedly different, alienated from most, doesn't form attachments, looked "suspicious" (sometimes shifty eyed or not making eye contact), did'nt say "hi" or "bye", came and left suddenly and secretly, extremely private, never gives only takes, lives in his van (which is the 4th car given to him by his father) or in the office, doesn't shower (sometimes up to a week), sleeps without blankets perfering the floor to a bed or sofa. Hides every penny he makes and spends none, easily offended, repeats over and over ....I could go on and on about his adult world.

The only thing I really know about "T's" adolescent world is that he was a real target. Beat up quite a bit for being different I'm sure. In fact "T" has arrived to our home on occasion "beat up" but claiming he fell, which we know was not the case - and he is 43 years old! He managed to have a girlfriend at one point in HS but that was short lived. Apparently in his teen years he was involved with some shady characters, drugs and guns at which point the mother disconnected. "T" has actually managed to hang on to a couple of highschool friends that he sees periodically through the years. But for the most part "T's" father and my family are the only ones he really has.

We had "T" assessed by a psychiatrist with a diagnosis of narsacistic and histrionic personality disorder. The suggestion was to "Cut him lose" however, life continued as before the assessment. I must be honest and say that anger brewed inside because of the constant "taking" and never "giving", I felt manipulated but most of all felt my husband was being taken advantage of constantly and willingly. My husband would give but never receive even a birthday card from "T". Even though my husband would run "T" down verbally, abusing him with words such as "F'n" stupid, GD this and GD that, look at the way the stupid A_ _ is doing this or doing that, I would intervene to stop my husband's behavior (which must be his own undisclosed anger seeping out). Even "T" deserves respect, if he does things different but achieves the same end result, what's the problem? This is where the psychologist part fits in as mentioned in the first paragraph (of my growing novel).

I have had to bite my tongue on many occasions but be honest and upfront at other times being the one to set boundaries. Now it is fair to say that "T" is BRILLIANT when it comes to numbers. I baked him a birthday cake one year (and every year since) and he said that he has never had anyone bake him a cake since he was a little boy. "T" showed so much appreciation and was so elated he just could'nt do enough for me that day. Since I have been able to see more into "T" by reading, researching, studying... Aspergers I am able to understand "T" so much better. I think it is so important to understand what Aspergers is. Oh yes, one of the most important parts of this writing is to saythat for the first time in "T's" life he has been exposed to animals in his family's household (he never had any animals growing up), my two cats and two dogs. There is a "connection" and bond there that you most likely will not commonly see. Additionally, there is a very affectionate and loving side that has come out between "T" and my animals. No one has ever seen an emotional connection exibited by "T", and for those that know him and then see him for the first time with these animals cannot believe what they are saying. It is almost as if it is a "safe" place to show what is inside - I'm not sure however, I just want to express this as something I have found. Possibly this might be theraputic in some cases.

I know I have rattled on and sorry to have taken up so much space but I have had so much to express and no one to express it to or to anyone who might really have a little insite (or a lot) in understanding. I commend all of you parents for being active in learning about this syndrome, please don't think you are too late in helping your child. If someone had just taken the time to inquire and follow-up on "T" he might be more socialized then he is. But the good part is that he is a scrapper and could probably live anywhere just fine and be quite happy.

SmkyTopaz

For me some days are better than others. I used to be so confused by Jayson's behavior. I keep hearing parenting advice because everyone assumes he is just being spoiled. It wasn't until August that I finally got him evaluated and once I did I was both happy and terrified. Now we are trying new techniques and he has not responded well to change. Which was expected. Jayson gets very irritated quickly. If I don't pay attention to him right when he wants me to he pinches me until I bruise. But then there are moments when he is the sweetest most caring little boy you could ever dream of meeting. He tells me I am his princess and that seems to make the bad not so bad. Hope this answers your question

....but she's showing a good number of the traits, and oddly enough, so am I. I can relate to many of the other parents, insofar as feeling as though other parents might be thinking there's something wrong with what I'm doing as a parent - and that insecurity would be there anyway, as many of the "normal" parenting things aren't working - and now I understand why. Making adjustments as to how I can best help my daughter, that's what I'm looking forward to.

We are not alone!! !
It's been fantastic to read all of these replies from different parents and your experiences ring a few bells in our house.
My eldest son is 7 and he can be hard work...it's the empathy (or lack of sometimes) that I probably find hardest...He can be playing nicely with his younger brother but will then play too rough to the point of his brother screaming and crying for him to get off.He wont leave him alone until one of us enters the room and drags him off!It's as if there is this switch that isn't working properly that would tell the rest of us "He's had enough, I better stop".
Yet,like a lot of other parents have been saying,he can be an absolute sweetheart without any prompting whatsoever and then you wonder "Is it me?Am I over reacting?It must be all in my mind!He's not that bad really."
It sometimes feels that he has a doppelganger and it's as if you'll get the good H in the morning and then he leaves the room and the bad H comes back in.
He is good at reading and spelling but not so hot on his maths...He has 2 main friends at school and yet 1 of them isn't a good playmate and they're always getting separated by the teacher.
He has a great imagination and would currently like to be a Dalek or the Emperor from star wars so that he could blow up the planet and just take some of his chosen with him!!
We haven't been telling any of the other parents he's an aspie because we don't want any prejudice because he's a bit different...We also don't want him to take any form of medication as we love him just the way is and don't want him changed into some kind of zombie who isn't the real H
Thanks for reading

She mightn't understand all this grounding stuff. Better to lay off all the pressure and then she will probably respond better. If there is one thing we Aspies hate it is being pressured to perform. This is irrespective of how smart we are. In fact, the smarter we are, the more we hate being dictated to.

For the lady whose daughter is interested in Egyptian stuff, my younger daughter loves all that kind of thing too. But she has always detested Barbies and doesn't care if people think her strange for reading 1,000 page novels. I don't think she is Aspie but she definitely marches to the beat of a different drum. She has found a few friends who also like anime.

The kids who would exclude a child for liking Egyptology and not Barbies shouldn't be pandered to. Barbies and similar dolls simply promote sexist stereotypes and as such, are a waste of time.

my son was dx when he was six years old, even though we knew he had autistic tendecies earlier on. we have had to deal with alot of issues over the years, from him being scared of trees, or to this day he will not eat mashed potatoes,he is as,with ocd,add and sensory intergration disorder. he is 13 now .he is very high functioning. meaning that he gose to a private school where he is in regular classes and is making average grades. he is playing on the junior high baskettball team,and is very talented guitar player. he has friends, I know that some may be thinking why is she complaining about.but the main area that we have trouble with is his daily living skills.which is very frustrating to me because we have been on a very strick schedule. because of his panic attacks. and from time to time usually after things have been going really good, he will have a situation that will cause him to wig out and then it's like a slap in the face to me. but through good times and bad times I would not change anything about my son,he has taught me so much more than I could have ever learned from any one else. I'm so proud of him . I think we are no different from every parent in the world , we just have more excitement. I concider it like a roller coaster ride, you never know what is over the next hill or around the next curve.but I love roller coasters!