Published on 12, July, 2020
hello! I am very grateful to have found this site. My daughter has just been diagnosed with autism and we are in the early stages of seeing if our local school can accommodate her needs. However, along the journey of appointments with carers, the psychologist and questionaires, I had a kind of “lightning moment” of realisation. Call me slow ( I have been married 17 years), but I am fairly convinced that my husband has autism. It would answer the times when instead of getting emotional support, he became very distant: after our first child was born (emergency c section), I was only told a year later by him, that she had come out grey and floppy, his first visit to see me in the hospital he said hello and then took out a paper and read it by the bedside, his reluctance to get help when I had a urinary infection after our 2nd child, falling off a ladder and fracturing 2 ribs and suffering concussion (told to get up and take a paracetamol), when my mum died, being reluctant to go to the funeral and remaining distant, the list goes on. At these times I remember feeling alarmed at his indifference, and incredibly lonely. A couple of years ago I woke up in the early hours with a pain like being hit in the stomach, I was doubled over and unable to move. The pain (gall stone blocking bile duct), came in waves and increasing intensity but my husband continued to lie in bed and refused to call for an ambulance. Luckily our eldest daughter came into our room and I begged to use her phone.The irony I suppose, is that my husband is a “double” doctor, ie, he is a registered GP, and has a PhD in neurology.
All these years I have struggled to find companionship. I had self esteem issues before I met my husband so when we met and he was attracted to me it felt wonderful. I sensed some kind of connection, my struggles with depression (exacerbated by sexual abuse by a catholic nun) and what appeared to be his social handicaps. I thought we would help each other...
sorry to ramble on, but just get this down has helped me, even if it doesn’t sound reasonable or fair. I love my partner, and am continuing to try to support him in his very stressful work, but I feel lonely as there is little or no companionship. I am trying to find out as much as I can to help my daughter and my husband and elder daughter (She was assessed at primary school for autism and was just borderline).
Dear NAS38972,
You may find it useful to have a look at our autism page on our website which has a vast amount of information. The page contains information on the basics of what the autism spectrum is, how it's defined in a clinical sense, and the characteristics of autism: http://www.autism.org.uk/about/what-is/asd.aspx.
Furthermore, you may also find it useful to have a look at our position statement about the cause of autism: https://www.autism.org.uk/get-involved/media-centre/position-statements/causes.aspx
Kind regards,
Ayshe Mod
please feel free to ignore this person NAS38972,
He has a strange notion he knows what autism is about, he actually knows very little , oh if you try hard enough you can get a blue badge to park. That he enjoys telling,,,Well,,,,mothers who come here looking for help and support.
I am autistic btw,
Strange I seem to be capable of putting several words together to make an intelligent sentence. Unlike some who only seek to spread doom and gloom,
I am worried that NAS haven’t seen fit to do something about him, after all I am sure even NAS wouldn’t agree with what he says? Would you NAS?
Maybe if I write out many swear words, use profanity a lot they might just see my words, I have hit the report as abusive button quite a few times for NAS38972, he insults me and scares me, his words give me nightmares, I find his behaviour towards his son to be less that acceptable,
NAS38972, you sir are completely wrong in what you think autism is, you consider yourself an EXPERT on your sons autism, giving him Pepsi and Dr peppers by the litre instead of the help he so badly needs is tantamount to neglect. He vomited due to probably having food intolerances, so instead of seeking professional help you take over and force feed him,
You only scare or worry mothers who come here looking for help. Why?
You have failed your son in every count as far as I can see. Oh and yes I am autistic, always have been, and no I was not born with brain damage, I suckled immediately, I can talk, I can sit hear trying so hard not to tell you just how much I feel for your son and to tell you to please stop trying to help,,,YOU are NOT. You have no understanding of autism or me or any other of the kind caring autistic folks in here,
can I please ask you STOP trying to frighten the mothers who come here looking for help not a story of how useless and Vegative all autistics are.
GO away pretty please....
When I first saw my son My only concern was that he had all his fingers and toes., as I did with his 5 brothers and sisters who were all 'normal'. Nothing was said to me about the panic going on at the far end of the room., I must have been moved out of the way. I just noticed his Colour change. However, My wife must have realised there was something wrong immediately because the baby did not suckle. and she lied about this to the nurses and got out of the hospital as fast as she could to get him home. Here at home she was in obvious distres, because the baby would only take little or nothing of any of the bottle feed offered.. We had a stupid nurse, who used to weigh the baby and say he was fine when he was not, In the end I had to take over and organise all feeds were weighed exactly before and after and recorded. Fot those interested Birth weight 6lb-7.5oz now I expected to see the loss of about 5 ozs in the first week, but he had reached that after 3 days and after a week he was down to 5lb 10.5 ozs it was a straight line to death, so my wife had to constantly try and feed him, thereafter in the first 24hrs he had 13.5 oz made up feed, and after further 7 days he was taking 23.25ozs feed in the 24 hrs and he had regained his birth weight, after a further week he weighed 7lb- 4.5 ozs these formed a straight line of weight gain that first battle had been won. Thereafter he would eat nothing but SMA Gold certainly for the first 18months of life. He would gain weight at the rate of 1/6th of the SMA he consumed., for each 6 ozs of SMA Gold he would gain 1oz in weight.at their normal feeding mixes.
Trying to feed him finely milled solids was very troublesome. He would take 5 teaspons of food and promptly on the 6th would vomit the lot up and so it would continue even to this day. He will eat just to vomit his food. He will sit in a bath surrounded by vomit and whatever else is there. and scream at you if you try to stop him. Not all the time but sometimes. He will sometimes not eat just demand Litres of Pepsi Max my wife has been watering that down by about 50% and giving him up to 4 litres a day in 500ml. bottles topped up with cans Dr Pepper and Ginger ale 1 litre Bottles. I dont wish to go on now about my son's behavoirs except that what I have written may help others to recognise some of the early symptoms that they may see.
If you ask the hospital for your Birth records they will have any incidents briefly noted.
I have no medical qualifications, But one of my son's is a doctor, I know the pressure of his studies affected him, we have not spoken for over a quarter of a century, since he qualified and moved away.
I can suggest that it may help you if you have a landline to put an extention beside where you sleep and connected wirelessly to one used daily in an office or somewhere else. These can be removeable and put back to charge. I have a BT Verve with a main docking position in an office and another secondary one upstairs . There must be others more modern but the power is always on if you have a landline, it would be easy to (dial) 999 to call for help without having to find a mobile that might need charging just when you need it. They also can be used to connect to each other to save calling up stairs or wherever
Thank you so much for your reply and for the insights and advice. It must have been distressing to see your baby son in this state! I appreciate you sharing this with me as my eldest pooped in distress too and I think the umbilical cord had become tangled round her throat. My husband is not my GP but having such knowledge must be a mixed blessing when illness afffects close family. It’s just good to know we Are not alone.
Your husbands qualifications would indicate he probably has made a diagnosis relating to your childrens condition.
My now adult son was diagnosed over 30 years ago by a Pediatrric neurologist, and a specialist team that dealt with child autism at the Wirral childrens hospital, He had been referred by the local hospital Pediatrician. at the age of 3.5yrs, because of his bizzare behaviour becoming obvious. following a referral by our GP My son too when born suffered a lack of oxygen episode. He too was grey, I dont know about floppy because I never held him just the Nurse as she rushed him to a resucitation unit somewhere else, although I was sitting next to one. He came back a little later bright red, because they must have pumped him full of oxygen. My wife medical records indicate There was menconium in the Birth Fluids, I He S... himself as he was being born in distress.
as one of the reasons for being austic is heredity and the only Reference I found, was the result of Chromosone fault called 'Fragile X' syndrome Both Myself and my son had a blood test for this and it was negative for both of us.
1, it would seem obvious that your families GP will not be, or should not be your husband, perhaps this is the patient GP situation he fears breaching, by not being wanted to tread on somebody's toes by insisting on a certain course of action. especially they are in the same Practice. It might be different on an Island with only him or another.on an agreed basis.
2, See your GP (Not Your Husband) discus your problem, and get him/her to get any blood tests for your self and your children tat may indicate, if your children only are positive then your husband aught to do the same. as you have only female interests, perhaps a female GP may be preferrable.
3, That said Medicall school is extremely stressful for students to pass, or get nothing. This can affect them. I know this from personal. family experience..
4, You say your children were assessed at Primary school, Was a neurologist or a specialist Pediactric doctor part of the team neaded, in respect of speech, understanding, comprehension, Interaction with other children, and any bizzarre behavoirs