At the age of 2 I was told that doctors thought my son had a form of autism ! He was sent to specialists after specialist from the age of 4 for diagnosis !! He hated change if I walked a different route he would cry the whole way is I changed my decor this really distressed him if strangers patted his head he freaked out !! He never played with toys only metal objects !! He took everything literally that was read to him !! At the age of about 13 specialists said they thought he was a highly sensitive child as he didn't meet the autism triangle as he knew expressions !! He is now 20 and is a very popular young man has loads of friends but really struggles with life he can't understand if a friend tells him he will be there in 10 mins but doesn't appear until 30 mins later he gets really stressed he is extremely loyal and gets so upset if this isnt shown back to him he is serverly depressed and says if it wasn't for his family he would commit suicide as he hates life and feels a feeling of nothingness all the time !! He has trouble smiling most of the time and says he avoids ppl as he doesn't want to come across as ignorant when ppl talk to him and he can't even force a smile, he has a real eating problem He has only ever eaten toast with egg cheese or bacon from the age of 2 and this really depresses him hhe said he hates eating but only does it cos he has too he cant even stomach the sight or smell of other food he has to have the same brand of cheese bacon and bread ! He is such a conciderate Young man and cares deeply about the ppl close to him !! Life has been so hard for us all !! I have asked him to go to the doctor but after all the yrs attending specialists with no out come he is so scared that he says he would rather kill doctors!! He will not consider medication as his faith in doctors is zero !! He struggles all day everyday and my heart breaks for him as there is nothing I can do !! I am convinced he has high functioning aspergers but when j said it to him he flipped out ! Advice needed please !!
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Diana71
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Every time I read this I could cry. My boys were diagnosed with Asbergers at 18 and 17. My youngest has eating issues like your son, he eats only a few things, has to be the same brand . My son can go for days without eating, the other one sometimes does not know when to stop. Some folks have no problem. It's all to do with an under or over sensitivity to things and not following through the consequences, the messaging system in the brain does not work properly. Yes to the toys situation, yes to getting upset if folks are not there precisely on time. A lot of his issues are due to anxiety, it's the most difficult issue with Asbergers. The over sensitivity to smell is a trait. Yes to being popular , what's happens they want to fit in, they don't want to and often can't explain their feelings. Sadly depression is also an issue.
The majority of specialists are clueless. What you are looking for is Prediction, they can't follow through. Tell him many very famous brilliantly clever folks are Autistic, we are ALL on the spectrum, it depends how the behaviour part affects us.
Unless he seeks help the anxiety and depression will only get worse. It's a case of going to GP telling him exactly what you have explained here, the eating, social skills, anxiety, depression, routines, obsessions, does he have any interests which he has an amazing knowledge , like a mini professor ? Has he any other issues like, dyslexia, dyspraxia, dyscalculia, epilepsy, associated conditions. Have any other family members have any of these issues. Does he have spidery writing.
The peadriatric dietician told us only the worst cases of Autism had eating issues ,idiot of a woman, could have been diagnosed years earlier.
It may be a case of looking for a Psychiatrist privately but he MUST specialise in Asbergers. Take any school reports if you have them.
Autism Iniative or any of the local Autistic Charities if you could call in might suggest a specialist, they know by experience who is good.
I know exactly how you feel. Don't give up, you are an amazing Mum. If he won't get help I have a suggestion if he is willing to talk to someone on Skype. His name is David Ward, he has started a business called The Learning Space, there is a website. He lives in the Scottish Borders and has left teaching and is dedicating he life to supporting children and adults with anxiety and helping with teaching skills. He also has a child on the Spectrum so has a real understanding . An amazing man.
If you need any further help please DM me.
in reply to
Asbergers is Autism . The only difference is Autism is where the IQ is below seventy, about that it's Asbergers. It totally confuses folks. Why they don't have one name beats me. Look on my other posts, there are suggestions for websites to look at. The Bag Ladies will make sense, Go back to your GP and demand a second opinion , have you been given a copy of Consutlants Letter.
You can also apply for PIP without a diagnosis, but it's easier with. Whatever you do get a benefits specialist to help you, the new system is a nightmare .
Thank you for ur reply !! I am convinced he has aspergers but I have been sent from 1 place to another from he was 4 till 14 every time they said "ur lucky u spotted this early" but nothing was ever done and no diagnosis was ever put on paper ! As I said he got so distressed going to these places that we stopped going it was the same silly questions every time with no out come !! He totally refuses to go to the doctor even tho the doctor is completely aware of the situation he has signed my son on to the sick benefit !! He broke down at the age of 17 (he is now 20) saying how nothing makes him happy he struggles to cope with every day life he has always a feeling of nothingness!! The doctor said he is depressed but my son won't take tablets he has been researching the Internet for self help of depression!! I asked him to look up aspergers but he refuses!! He is a genius on the computer and spends a lot of time on it in his room with the blinds and curtains pulled !! He said he feels like a robot and talks monotone!! He only wears tracksuits and has always hated new clothes he cuts his own hair as he cant stand going to the barbers! I paid private for a therapist about his eating that failed miserably and he left every week feeling tearful the therapist even offered to keep giving him treatment for free but it was too deep and he stopped going !! I know he needs professional help but I am hoping that he will realise that in the next yr or 2 it is so difficult for us all !! Thank u again for ur reply and I wish u all the best with ur 2 kids !!
in reply to
I agree with everything you have said in your reply.
My boys are brilliant on Computersspending loads of time in their rooms. The reason they do this is it's a world they can cope with. They are in control of who they talk to with no face to face contact. They feel safe and happy. They both have sleep issues, the youngest did not sleep through the night till he was 6. The sleep depravation due to anxiety went off the scale due to ignorant arrogant teachers refusing to put support in till they had a diagnosis . I found out too late I did not need a diagnosis. He was staying up all night, could not follow through that if he stayed up all night he could not go to school next day.
Would your son consider antidepressants? My eldest will spend his life on benefits due to total incompetence in schools and NHS. He rarely leaves the house or village and has uncontrolled epilepsy.
If he is still meeting friends that's positive. Talk to your doctor, plead for help.
The eating, don't push them, accept that if that's all they will eat it's better than going down the anorexic path. It's now thought one in four anorexic kids are on the spectrum. Also there are more boys than girls with eating issues.
I am fighting all the way to expose the appaling situation but when SNP education ministers cover up situation, and NHS cover up its disgusting.
One person I read about ate advacodo pears and hard boiled eggs. That was it. Mine goes into meltdown if the packaging changes.
See if you can a copy of consultants report. Explain to your son he will be entitled to more money than ESA , hopefully put him in the support group, and he will be able to get more computer equipment , go in taxis, just little things that will help.
Sorry my replies are bitty, doing medication at present. The hair yes, mine both have issues. It's a challenge to get them to barbers, never mind shaving. Another issue to personal hygiene, not following through what happens if you don't shower etc. Spending time in their room and not wanting to leave safe environment. Wearing the same clothes for a week day and night. Not wanting to go into clothes shops, it's because of social communication.
Found out as we progress the eldest does not dream, it's a dark frightening world for him. The youngest had told me , I don't like people, he is a musician but likes them because they accept him for what he is , slightly quirky.
I at one stage wanted to end my life , fell so depressed but that I am learning as I go along it helps. Every day is a challenge , no one really understands but parents of Autism Children.
Please keep in touch. There are always folks on here to listen , it really helps.
You could be describing my son...every thing you say, every detail. He wasn`t diagnosed until he was 28 years old and it was a fight to get the diagnosis even though he had attended a pediatric unit for 4 days when he was 2 years old. They said at the time it was wrong to label him, which meant for the next 26 years we had the same experiences, the same day to day struggles with life as you and your son are having. Please tell your son my son had all the feelings he is having, he was in despair because he couldn`t understand what as happening to him and found it difficult to explain his feelings. It wasn`t until a Psychiatrist referred him to a specialist in Autism he got the diagnosis of high function autism/aspergers. I know exactly what you`ve both been going through, the years of struggle, not knowing how to help when wherever you turn you seem to hit a brick wall. You never have enough time to say everything so my suggestion is you write everything down similar to you have in this forum, but drop it off for your Doctor to read a few days beforehand and explain you`ll make an appointment when it`s been read. Don`t be fobbed off, experience has taught me you have to keep shouting to be heard, I have learnt the hard way but i make sure I have my say now because my son cannot make his feelings clear. It`s all a case of funding that open door and getting the right help so just keep on knocking until you do, all of us who have been there know and are right behind you. Please let us know how you are progressing.
I forgot to mention even now 11 years on from his diagnosis my son will not have the word autism mentioned, he will not accept this. If your son cannot face the Doctors just go alone...I had to, because my son still hates me or anyone talking about him, he is in a specialist unit now but will not go to any meetings or discuss his care.
My eldest is the same as to meetings, I am lucky if he leaves the house four times a month. He now tells people he has Asbergers. The youngest sometimes tells people but he would come to meetings.
The other suggestion is Magnesium and vitamin B6 tablets. They are used to help anxiety, you can buy them anywhere, chemists, supermarkets. It's worth asking if he would consider these health supplements, don't mention medication.
If eventually you could get a diagnosis Autism Iniative do work with young people. Social outings , it's good they understand they are not alone.
I am desperately trying to get help for my eldest.
I hope you succeed .
Before I start the daily onslaught with food and routines the one thing I found out is that my son was entitled to a disabled bus pass without a diagnosis . You have to get a special form from the Council under Mental Health and Consultant signs it. They say something like getting out and about will help anxiety and depression.
The ironical thing is that Asbergers is a neurodevelopmental disorder. Why it's not diagnosed by them I don't know.
If he is formally diagnosed and gets PIP you can then add on a companion carer if he gets the correct part.
Thank u all for the replies I have taken something from each of u that is helpful !! To most ppl outside of my home and close family and friends everyone else thinks my son is normal, they would have to really know him to c the struggle he is living every day !! He thinks he can sort it himself and just blames his struggles on depression but he's refusing to acknowledge that there r underlying issues that is causing the depression (I believe aspergers) that's y we r finding it all so hard !!
Go to your GP alone, tell him how it's affecting YOU personally and your other family members. If he is a good GP I am sure he will find a path which will open a door to providie answers. Follow Eliza's advise go to the Doctors on your own, you will feel guilty but it's the only way to do it. I have a friend and her daughter who have both had breakdowns trying to find answers and cope with her sons mental health. He is eventually under assesment but tragically the entire family unit has collapsed.
I have been to the doctor and keep him updated he sent a referral to the asd clinic but my son said he is ok and would commit suicide before he would go to the clinic my doctor said there is nothing he can do as my son is an adult and it's his choice (which I know is true) I just feel the whole system has failed him as I was attending the doctor and specialists for yrs and nothing was done !! I'm now left with a suicidal young man who has no idea Wats going on in his head !! He said he would never commit suicide cos he loves his family too much but if I died then he would end it for his self as life is just a struggle everyday!!
That`s good...one step at a time. Just go with it, don`t talk about it too much to your son, like mine he`ll get anxious and retreat into himself. My son would not go to see people, but that did not stop them from coming to see him and they`ll come and talk to you if he doesn`t talk to them, you can for him, they will then see the big picture. I`ve had teachers, doctors, social workers, mental health workers all talking to my son through the bathroom/bedroom door, one Doctor even followed him down the road! But they spoke to me and they judged the situation.
It takes a while to get the process going and my son was in and out of a psychiatric ward for a couple of years before he got his diagnosis from a specialist in autism in the hospital, this led to more specialised help. It is out there but your son won`t fight for it, mine wouldn`t and he still resents help most of the time, but more and more he`s beginning to accept it albeit on his terms.
I`m afraid you`ll have to push for him. It will be very hard for you both but it`s hard for you now so really you don`t have a choice you had to move forwards.
We can`t change our sons, we all think `what if` at times. One Doctor told me my son wouldn`t like the life I had hoped for him anyway, so I needed to stop thinking like that.
My son has said the same things as your son about suicide, he also like many others says he doesn`t want to live if I die, keep that in your mind when you`re going forward because he needs the help from others to keep going on, to be as independent as he can be, you need to see him settled and living his life to `his best`. Believe me it`s not easy, my GP told me that it wasn`t going to be easy ever, understand that.
Like you over the years we despair, we`re drained because we love them so much we don`t know what to do to help them. When you accept you cannot do it all on your own and you need help, the right help, the sooner you start down this road the better it will be. Let them into your home and tell them all you can, write it down, just let them know.
Also the Autism Society has a website, you can join the society, there is a lot of information on the site and they can point you in the right direction, any questions, they`ll help. You`ll see others in exactly the same position, this helps yo to know you`re not alone. There are websites you can chat on, others will help you with a solution or just chat when you`re at your wit`s end. There are meetings, you may even find you have one you can join locally.
You feel like you`re hitting a brick wall, been there, done that, you have to punch your way through it.
Sorry to have rambled on, it`s almost like I`m talking to myself but I just know how you feel, you could be me...please keep going forwards, it really is the only way.
Please don't apologise for giving me advice !! I really appreciate it !! I have talked to doctors and a doctor from the asd clinic and they say that they can't do anything if he doesn't come to them his self !! I have explained everything to them and asked them if they think it's aspergers and they say it sounds like it but we can't b sure until they see him !! That's not going to happen anytime soon !!
I know it`s difficult but you have to find a way to open the door when it`s `slammed in your face`...you basically have to become a pain that doesn`t go away.
Write letters to the clinic with all the information you can give them on your son (have you got the address?), also give a copy to your own GP, the letters will be there for future reference as well.
Join the Autistic Society and ask for their help, they have people who can point you in the right direction.
Contact your MP to see if he will support you, we had a really good one at the time and he did.
Go to the Doctors yourself and say you need help as well, you need support, stress you`re at your wit`s end.
I know my son got help from a specialist doctor in the end who visited him in the psychiatric ward, things had got so bad. A psychiatric unit (I didn`t need to be told) is one of the worst places for a person with autism/aspergers. He had challenging behaviour, nothing physical, mainly clothes/furniture, a lot of staff didn`t understand autism, even when my son had the diagnosis they refused to accept it, fortunately we had a very good Consultant who admitted he hadn`t much experience of autism but knew my son was different and pushed to get the right help for him.
There are so many cutbacks in the NHS too, waiting lists to see specialists are getting longer.
I know too how difficult it is when your son like mine won`t talk about what`s wrong either even through they know something is. I won`t say try talking to him on a good day because I never have found that day with my son, even through he`s in a unit now no-one else there has found that day.
I just know you can`t continue on as you are so you have to try everything even when it seems hopeless.
Have you looked on the Autism website for help? They have people who might have some other ideas, they`ve seen it all before and faced lots of different obstacles, give them a try, every avenue is worth exploring, please don`t give up and also don`t blame yourself...that`s something we all seem to do, it`s this feeling of guilt, we want to make things right, we want them to be happy, have some quality of life and we share the pain they feel, every single day.
I just wish I could help you more.
I know exactly how you feel. I am in virtually the same position. I have no family locally. It terrifies me if something happens to me, my husband died nearly 10 years ago. My eldest son would have to go into some sort of residential care like Quarriers. The younger one may be able to live independently but with a lot of support. The eldest one was expected to go to a first class University, really bright and clever, the youngest I always knew something was wrong but could never find out what. If you had the same replies, it's the blond hair and blue eyes, they will grow out of it, it's the naughty twos, it's a new school and they have to adapt, hormones, puberty, the list goes on and on.
I have been abandoned the same as you. Was told by one Consultant, you have the diagnosis now put him on antidepressants as a reply to blatant incompetence by his staff.
I honestly don't know what will happen but I am not giving up.
in reply to
Yimen...I agree, none of us knows exactly what will happen, we have to fight on though, I`m with you never give up and challenge that Consultants....I think I`ve met him
It's awful and I really feel for u !! My husband is still here and very hands on I really don't know how I would do it on my own !! The system has a lot to answer for !!
Yep. Met another yesterday. He has a degree and has read so many books, knows everything about Autism. My first question was, !Have you ever lived in a home situation with an autistic person ". They have no idea whatsoever. The Consultant who diagnosed my eldest and the ADHD and ADD part in my youngest has moved away and does not do private work. He was one of the nicest kindest understanding people I have ever met . The Locum at present is a total oddball weirdo. You need a stiff drink and a strong sedative after a session with him.
There is no reason why a GP with a bit of training can't do the same. Have you been to your GP . He should be able to ring the Consultant himself and get a definite answer explaining how distressed your son is and how it's affecting you. The original Consultant came to our house, saved the distress of going to hospital. Very few do this.
I was reading yesterday that a family in the Scottish Borders are taking turns each to go into school to help their five year old child in otherwise he would get no support. Nothing about Autism Spectrum shocks me anymore, it just breaks my heart we as families and our children go through hell. It should be so different.
I have just gone through through another form filling session to get 25% reduction in my Council Tax. The GP signs a form to say the person has mental health issues to get the reduction. Had all the information on letters but that was not acceptable because if the Council was audited it was on the wrong form. Never knew about the reduction till someone told me.
Is there a Carers help group in your area? Somewhere where you could pop along to and talk and listen to other parents like yourself. Explain your son is under assesment but would it be possible to attend. It's humbling listening to other stories but it's good that someone really understands your situation.
I am sure with your determination you will get your answer, hopefully soon.
It's hard work but I look at it from the boys world, it's like climbing Mount Everest for me every day and not reaching the summit. For them it's like never leaving base camp. I like so many others are battling for change.
If each of us can do our tiny bit and help others it makes more understandable , well that's good. That's the thing about disability , it covers all races, gender, money makes no difference but folks work together to help each other. If only the rest of the world did the same.
Just a thought. When they passed the new Autism Bill they appointed what is called `The Autism Lead` a person for every local County Council, you must have one at your County Council, they may be able to help, again it`s worth a try.
I got this information from them when I asked for the name of The Autism Lead` at my council.
First of all I misread your comments, We do have such a system but it's kept well hidden on websites and like me I found out afterwards . Once I approached this person it has been a case of cover up and excuses. I have heard yesterday from another source there is going to be a major shake up of the Educational Psychologists as well. Not before time.
Sadly that applies to England. Scotland is 30 years behind the times in my opinion and has these policies and strategies which are not worth the paper they are written on. Have heard via the grapevine that they are now reviewing how they could have done things differently for the future.
They still have the same staff so at present won't change. I have offered to show them the mistakes we all made and how I worked out the answers. Not a chance, a scatty mother telling all these Doctors, teachers etc , after all they have all these qualifications and years of experience. That would admit there were clueless.
We have lived with our children , might not understand or pronounce all these big words but we watch their behaviour and how it affects them. It's so different at home than school. I talk about The Gin on the Weetabix Days, getting them out to school, meltdowns because they did not want to go to school because of the sensory overload and they could not cope. The issues afterwards at home because of the same overload they have faced at school.
One day every teacher will be trained and the fantastic Columba Unit in Renfrewshire will be the norm. There's a video online , it's amazing.
One day it will change, there will be a blood test for a diagnosis, but at present we just have to battle the ignorance.
One day seems a long way off at present.
So so excited. All I can say is that I have had to send the Minister's letters to some very important people who are now investigating my story. It contravenes all the Policies and guidelines. I been trying to tell them that for ages, and so have so many others before me.
Dont want to get my hopes up have been knocked back so many times. Thank goodness I kept all the paperwork. It's like the bag ladies story come true. Fingers and toes crossed.
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