What are the main recognisable signs of a c... - Autism Support

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What are the main recognisable signs of a child with Asperger's or Autism? How can I get a diagnosis? Thank you.

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Triciatextiles profile image
Triciatextiles

The national autistic society website has a lot of information that you will find helpful here is the link autism.org.uk/

How old is your child? what gender are they? what signs is he/she showing that makes you think that they maybe on the autistic spectum?

My daughter is 15 and has only just been given a formal diagonsis although I knew something was wrong since her early years.There is a problem with getting girls diagnosed because they dont display the same signs as boys.

Tricia

Oenone profile image
Oenone in reply toTriciatextiles

My daughter, now 16, received her Asperger diagnosis at 15. I'd be interested to read about your experience and maybe share mine as well. I wish I'd known about some possible signs, but just didn't. My older daughter is happy and copes well but I suspect she also has it, possibly lower on the spectrum. My husband has it though is too old for a diagnosis earlier in life but I wonder about my own genes too - though I know I'm neurotypical as living in this family is actually quite hard - sounds horrible to confess this.

Triciatextiles profile image
Triciatextiles in reply toOenone

Hi - It is difficult to know where to begin as my daughters story is long and full of heartache for both her and myself. I realised that something was wrong with her around about the age of 2 as she would not play with other children and wouldnt even go in a playground if other children were around. Her speech was fine but she had selective mutism. She seems terrified of the outside world.

When she started school she found it difficult to make friends and was always on the 'fringes' of the playground until she was able to get to know the other children which did and still does take her some time.

The school were hopeless, at one point it was suggested to me that she couldnt speak and needed speech therapy,(because she wouldnt speak at school only at home, I told the school this but they didnt believe me) that she maybe being abused (which I knew was just not true,). We were made to feel like overprotective parents or parents that neglected our child depending upon who we were speaking to at the school.

My husband and i have fought for years to get her help but little was fourthcoming. we managed as best we could and I have tried my best to teach her some coping strategies. Last year she was referred to CAMHS because she began self harming as she just could not cope with school.

I managed to get a copy of all her health and school files. What was contained in them was a real shock, they contained reports, assessments as well as comments about us a parents which to say the least were completly untrue, some reports we have never seen clearly showed that she was on the autistic spectum but this was never discussed with us and no action was taken. CAMHS blamed me for my daughters difficulities even though my daughter told them that she had no problems at home and she could talk to me about anything.When I formally complained to the CEO of the Mental Health Trust they escalated her diagnosis and this was confirmed as Autisim although we believe that she has Aspergers and are in the process of getting a second opinion.

There are many parts to our story this is just a very short summary. I have evidence in her files that one school in particular were negligent and that legal action could well be sucessful but I just do not have the stamina to persue this.

I would be interested to hear your story.

best wishes

Tricia

Oenone profile image
Oenone in reply toTriciatextiles

Thanks for you story; very well put. Certainly 'the powers that be', mainly school in my limited experience of some other situations, don't act unless the parents raise the subject and then 'pester'.

I missed signs in my daughter, knowing nothing then about Asperger's.(reading fluently by 4, food fads ,tantrums,perfectionism, anxiety and more) We lived quite an isolated life(still do - typical middle class suburban life away from what little family we have and having to form new 'networks') so her 'funny ways' were shielded from outside 'disapproval' by our lack of intimacy with people and by my own subtle interventions and compensating. I did/do it in lesser ways for my husband and other daughter.

My husband's lack of empathy and assistance when my father died nearly 3 years ago made me seek out my new excellent GP as I was feeling anxious and depressed. It dawned on me that my husband may have Asperger's and when my daughter told me that she felt she should be MALE I started doing more research and the GP referred her to CAMHS, all of which has been slow. There is evidence among people, especially females, with Asperger's that they do not have a clear perception of gender so I mentioned this to the CAMHS psychiatrist who actually agreed and pursued a diagnosis of Asperger Syndrome. He has also referred her to the Tavistock clinic to check out the gender dysphoria - very slow, still waiting.

To my daughter, the Asperger diagnosis is of secondary importance to the fact that she wishes to change sex and she seems unwilling to learn coping strategies in social and empathic skills, as well as managing her anxiety and perfectionism, from me.The other day though I was delighted that she asked our hairdresser, of whom we are fond, if she was better as she had been off sick for 3 months. I nearly punched the air and shouted 'result'!

Her school has played little part. I spoke to her head of year two years ago and got nowhere, then went back at the beginning of year 11 with little success especially as, when you have had your child referred to CAMHS, school cannot do anything in tandem so all I could do was make them aware of the diagnosis and her mental state.

Like you I certainly have been made to feel overprotective or no good as a parent (mainly by school). As regards abuse, unfortunately it turns out that my daughter was abused by a brother of a friend, 5 years her senior, so really only pubescent when this started. This probably had an effect on her but though the police know we are not taking it further because my daughter wants to try and put it behind her finally. I am just looking forward to the time when she will get some good therapy. Must go as people are approaching my computer!

ToniManifesto profile image
ToniManifesto in reply toOenone

Thanks Oenone. Just on this site and finding difficulty with the named poster and the person signing off. Your problems with your daughter puts my problem with my Grand son into insignificance. I just hope you have more success in the future. My lesson has been that all children should have a Spectrum test before 30 months. Just like a vaccination programme.

Oenone profile image
Oenone in reply toToniManifesto

i'm not very used to forums and am technologically inept so not sure I'm clicking on the right thing! Your idea of a Spectrum test before 30 months is brilliant - I totally agree. Health professionals (I'm sort of thinking Health visitors perhaps) seem to not want to suspect an ASD first off so that certainly some children have tests for a whole lot of different 'problems' first. I am particularly thinking of hearing tests, which many kids don't do well in for reasons not to do with hearing. Funnily enough I believe my husband was made to have grommets because he basically didn't listen to what anyone said to him - the reason actually being he is on the Spectrum rather than his hearing being the issue!

ToniManifesto profile image
ToniManifesto in reply toOenone

The health visitor comes to my daughters house sits down and asks a lot of questions. My son-in-law answers that everything is fine. The health visitor ticks all the boxes and leaves. It's amazing that you say about hearing. I have had disputes with family members as I keep telling them there's no point he can't here you. I don't mean he's deaf. I mean he's off in a little world of his own and I'm the only one who notices. My wife gets very annoyed with me if I even mention Autism.

ToniManifesto profile image
ToniManifesto in reply toTriciatextiles

Your problem is the very opposite to mine where you have done your own diagnosis. I am an ex health worker and I believe that my Grand son has a serious mental health problem. I know that there is very good Child Development services close to me and I do not have a problem with any of the authorities or services. My problem is that my daughter does not want to ask for advice because she is in denial. Because of privacy laws it is doubtful if our GP will talk to me as my daughter is the legal Gaurdian which I think is good in one way but the child should always come first so I should be able to intervene.

Oenone profile image
Oenone in reply toToniManifesto

Parents in denial - that is a common situation I feel. I know of two children who were at primary school with my daughter who were quite a trouble to their teachers but the teachers couldn't act because the parents wouldn't accept that the kids needed some help. The girl is in my daughter's class at secondary now and I know that the head of year had sussed out a couple of years ago that she needed 'unofficial' help even if she didn't have a proper diagnosis. Meanwhile my own daughter has the ability (maybe not conscious but a default mechanism which I think many ASD girls display) to behave well, fit in and be compliant outside the home. This exhausts her by the way.

I wonder if parents tend to want their children to be like them only better and when that doesn't seem to be happening it is v.hard to deal with.

ModifiedMommy profile image
ModifiedMommy in reply toToniManifesto

You should absolutely not be able to step in, as his grandparent, in regards to his medical care. If you truly feel he is a danger tp himself then call and report him as such and he will e to stay in an adolescent psych ward for an evaluation. That should prove or disprove any medical theories about his condition. If you don't wish to upset the relationshipbetween yourself and your daughter I suggest leaving it alone. The state is required to intervene with families who are in denial once the child reached school age.

KRichards profile image
KRichards in reply toTriciatextiles

Hi Trish. Your story is so much like ours. We have just received a diagnosis for our daughter who is nearly 14. It explains everything now and we finally understand why she has struggled so much at school, with sport and with her emotions. She always has seemed to lack compassion and has found social contact very exhausting and takes all these thing personally, as a failure. Receiving this diagnosis has helped her understand that she is unique and all these things are not her fault. We are also able to understand her better and this has helped enormously. Unfortunately the damage that has been done is very evident now and we wonder if she will ever be independent. We hope so and are working hard at getting her the help she needs to succeed. During her time at primary school, she was excluded and bullied. She dealt with it pretty well and became very resilient, but then on a school camp she became unwell and they ignored the fact she needed medical attention, made her go on all the excursions, made her eat and stopped her from ringing me. When she came home she fell apart and had a breakdown. We took her to CAMH's and they were HORRIBLE ! Told me that I need to be stricter and to walk off on her when she was having a panic attack, they even told me that nervous parents have nervous children. Their advice did not make sense and I took her out of their care. Luckily I did that as she was seriously sick and to abandon her would of made things worse. Now we know it is autism it makes perfect sense as to why she reacted so strongly to being treated like she was on camp. So now we have a child with level 1 Autism and a co existing anxiety condition due to the trauma she suffered on camp. I am devastated that this could happen in the care of an organisation that I trusted with the care of my child. My advice is keep all those records and start writing things down. You have 6 years to take legal action, perhaps later down the track you might choose to. It's just hard when you are exhausted. Sometimes legal action is what it takes to change the system. Seems so ridiculous though, as surely the care and psychological health of a child is enough reason. The one thing I have learnt through all of this is ... sometimes people do not do the right thing. My heart breaks for my child and I will not stop until the legislation in our state has changed to protect her and all like her. This is just a snippet of our story too. There are so many incidences of lack of care I can not put them all in one post. Sending our love to you and your family and just to let you know that you are not alone. xx

KRichards profile image
KRichards in reply toKRichards

Oh yes and I wanted to say too, that we started treating my daughter for OCD by supplementing a genetic condition called MTHFR. We were doing this even before we realised that she was AS. It's worth looking into as apparently around 98% of autistic children have it (it is common in the population around 30% - 40% anyway) We supplemented with folinic acid (not folic) or methyl folate an active form of folate and active B's amongst other vitamins. This has had a huge impact on her health. Her depression is gone and she is melting down much less. It also helped her sensory stuff and social interactions. It has put her body out of stress (caused by vitamin deficiency). Can only recommend to all of you out there is you have not come across it. Dr Ben Lynch - Seeking Health is one of the leading experts and we follow his guidance.

Schaefs3 profile image
Schaefs3 in reply toKRichards

Hello there- I was wondering if you can help me. I saw your post regarding mthfr and I was excited to see that bc not many people know about it. My son is almost 7 with no diagnosis but I have suspected he id on the spectrum...no one will really give him an official diagnosis bc of different opinions about him and his behaviors being do borderline. Anyway, he has 1 copy of the mthfr mutation- c677. I want to put him on supplements but not sure which ones. My regular pediatrician won't discuss this probably bc they don't believe in it. I think it will help w his emotions etc. Can you suggest anything that may be helpful? Thank you so much!

ToniManifesto profile image
ToniManifesto in reply toOenone

Well Oenone just read my post to tricia. My biggest problem is trying to get my daughter & son-in-law to seek help. They get very distressed when I ask them to even see a GP about my Gran sons condition.

ToniManifesto profile image
ToniManifesto in reply toTriciatextiles

Thanks Tricia. My Grandson is three years old. He is extremely hyper. The main noticeable symptom is a constant high pitch screaming shriek which he has been doing now for two years. He is very aggressive, often violent, seems at times that he is not in this world at all. He even talks to imaginary people when he looks up in the air. He is obsessed with plastic farm animals. He has broken his dads front tooth, split his other Granddad's eye, injured my 26 year old son, pushed his great grand mother aged 86 over. All this and yet he is the most lovable child ever! He comes to me & hugs me, kisses me and says thank you Grandad for the simplest lil things. My problem is his mother & father say he is a boisterous child. They do not see him as a problem child. It is so bad that he cannot be taken into public unless two people accompany him. I am not exaggerating any of this. In fact I'm under estimating how bad life is for us.

ToniManifesto profile image
ToniManifesto in reply toTriciatextiles

Sorry eshopper. I addressed you as Tricia & told someone else to look at your answer as Tricia. I have replied to your advice & thank you. Not sure if you got it.

kat1306 profile image
kat1306 in reply toTriciatextiles

Hy. My son has been dignosed with autism he is 16. He started going in to shy, withdrawn,angry sect from the age of 11 it has been very shy from a toddler.I always new there was something wrong with him but no one would listen to me and that was very stressfull. Like urself his school blamed it on me saying I was too over protective. Until I said if had enough and finally he got referred to camhs. It took 3 and a half years for them to take action. I also was thinking of going to take legal action . So I will do soon.

ToniManifesto profile image
ToniManifesto in reply tokat1306

To my knowledge the area I live in has good facilities for diagnosing Autism, Asperger's. I think if my Grandson was referred he would be seen within three months. Paediatrics are only 2 months to see a Consultant. There are two Clinics where child development officers study children on their own & also parent & child clinics. I think I will have to until my Grand child goes to pre-school. The school will know right away what the problem is and hopefully will refer him themselves. I seen a website which gave very graphic symptoms of both spectrum. But it also warned that early diagnosis is important and if there is concern the child should be examined and put on a list at 18 months. My grandson will not have to wait till he is eleven till he is diagnosed. He is so disruptive now that any psychiatrist observing him would prescribe immediate oral medicine to protect him from himself. It would be worth having your long wait for diagnosis investigated. But suing the medical profession is a long hard road. A friend of mine went through 11 years of legal action but it was not worth it even though she won. But legal advice would be helpful to ease you mind. All the best for you and your son.

Oenone profile image
Oenone

How old is the child and what is the sex? I now know that one classic sign is lack of imagination in play - pretending to be someone else or imagining scenarios with toys - in early years. I lived quite a fantasy, role playing life as a child, also being very imitative of adults around me (admittedly I was an only child but I also come from a generation where playing out with other neighbourhood kids was the norm) but didn't realise that both daughters' lack of this was anything other than just being different to me. I have diagnosed my husband with Asperger's but the genes may also come from my side as well.My three sibling girl cousins seem to have been similar as I remember. The eldest is now a very driven high flying accountant (nothing wrong with that ha ha!) and the two younger have had depression all their adult lives (now in their forties). I believe depression is not unusual in people with diagnosed or undiagnosed Asperger's. There was an interesting mother and son(the latter with autism) on Radio 4's Saturday Live this morning - quite encouraging and a different hopeful perspective. If you didn't catch it try and do so online.

Oenone profile image
Oenone

You may find it an uphill struggle but, depending on the child's age you should talk to your health visitor (I think the child needs to be maybe under three or perhaps not yet in full time school), your GP - arrange a proper appointment for your child, or try through school - this may be the slowest and most uphill struggle - just warning you!

ToniManifesto profile image
ToniManifesto in reply toOenone

He is my Grand child. My daughter's child. If he was mine he would have been examined and diagnosed 2 years ago.

Oenone profile image
Oenone in reply toToniManifesto

Anniehunny01's experience is valuable and of course her remarks about isolation are worth taking account of.

Thinking about how early children enter the education system these days, I'm wondering how much longer your grandson has got before he starts nursery at primary school.His issues may be serious enough to be spotted and this may start him down the road of diagnosis and treatment/care/help etc. Try to hang on in there until that happens. Boys on the spectrum can be picked up on sooner because they are less imitative than girls and also education is quite 'feminised' these days so any boy is liable to go a bit hyper at school because school just doesn't take into consideration the need (this affects many girls too in my opinion)to be active - playground time is so much less than in my day.(Must be getting old, I seem to say 'in my day' rather a lot!).

Can you do some research online about excluding food to help behavioural problems in the meantime? It is experimental of course but worth trying if your daughter will go along with it and of course, your grandson. There are things I wish I'd done with my kids as regards stricter discipline - if only I'd thought to myself that they wouldn't remember it! He's only three so he is not likely to recall some dietary strictness imposed upon him! What about his bedtime and sleeping habits just wondering?

ToniManifesto profile image
ToniManifesto in reply toOenone

Oenone. He is meant to start preschool in September. But he has to go in for one day next month. I am worried that my daughter is going to be devastated when he is rejected. If I was in charge of a group of 3 year old kids I would not allow my Grand son loose with them. I really do mean it when I say it takes 2 adults to take care of him outside his home environment. My son-in -law is 6 foot 3 inches tall and he does have difficulty controlling my Grandson. His problem with food is he does not like the feel of some foods in his mouth. He loves apples and spaghetti. Bed time is no problem. In fact he seems to enjoy the solitude of his bedroom. He is an only child. I can't see how he could enter play school with this high pitch screaming he does almost constantly. Other children are afraid of him at times.

anniehunny01 profile image
anniehunny01

my youngest son was diagnosed with aspergers 3 yrs ago he is 11 now. It is a hard slog getting the answers you want,I am very fortunate to have a great husband who pushed it all the way. The funny thing was my husband thought from an early age that something was not right and when he started nursery on the first day a worker there told us she thought he was autistic. It takes a lot of time and patience the biggest things we were told to look for was lack of eye contact and a reluctance to play with others,not liking new things(xmas was a disaster in our house as anything new was a no no) he would leave the room until we put it all away.He was very territorial about our home, if someone was at the house even a friend when he came home he would throw a major tantrum and refuse to go in the house it seems that familiarity plays a big part of their lives, they like routine so we had to do things in the same order during the day it makes life easier for all of us i am not saying it is easy but it is managable and once you have a diagnosis you can move on one of the biggest things for us has been his food phobias i call them that purely as i dont know what else to call them their diet is very restricted and getting them to try new things is a nightmare. I hope you all dont mind me saying this but i wish you would focus more on the positives as my son Matty is a lovely boy, he has a great sense of humour and does try his best to join in with the rest of the family and his confidence grows by the day (he managed to walk halfway home from school by himself the other day i cried so did his dad ) he is getting ready to go to secondary school this year, a big milestone in his life. He wont find it easy but with our support he will cope.Stay positive and dont be ashamed of telling people your child has autism most people will embrace it and it makes life much better for all of you.Finally get in touch with your local autistic trust they can be very helpful and run classes for the other siblings so they understand the condition better, it makes you all feel less isolated. Hope you sort things soon.

Oenone profile image
Oenone in reply toanniehunny01

You are being very positive which is great to see. What makes me less positive sometimes is my loneliness (and I wouldn't call myself an extrovert!) but what makes me positive is that my husband (whom only I have diagnosed tho' he now agrees) has done very well in his career - many asperger's people have great ability to become experts in their field of interest - and is pretty happy. My older daughter who may or may not be on the spectrum has really found her niche in the 6th form with some really good friends and hopes to go to uni to pursue her passion. The younger one obviously I am not quite sure about yet but funnily enough despite her insecurities many girls at school really like her. She has passions too which she hopes to pursue in the future - she is also academic.

I agree that Asperger youngsters tend to have a restricted diet and don't like change - big time! Also on a positive note I have to remember what about my husband appealed to me when we met - funny, boyish, not at all egotistical like some other men I knew!

What does Matty eat and not like to eat by the way? My daughter has many funny little ways concerning food! I am wondering whether Tonimanifesto's daughter could be persuaded to try some food exclusions and diet changes and improvements just to see if can bring about any behavioural changes. Obviously if there's a lot of food faddiness there it may be a big problem but I so wish my daughter would have a more all round healthy diet like the rest of us as I think it might contribute to her wellbeing.

anniehunny01 profile image
anniehunny01 in reply toOenone

hope my comments helped a bit.My son would live on toast if i let him.He has a weight problem but then so has my other son we are all big and losing some excess would do us no harm.I recently started them both on a healthy eating plan which for my oldest is easy but with matty its not so.He likes toast,marmite,sausages,chicken,chips,mash pots,gravy roast pots,cereals he will only eat shreddies or coco pops i wont allow any other high sugar ones not that he likes many of them. he likes certain biscuits like cookies,rich tea,fig rolls and anything chocolate only if its good quality.he will eat certain types of apples and an occasional banana. it is quite amazing and i dont know if anyone else finds this but matty can tell where i have bought certain foods from eg an own brand biscuit or gravy powder he can tell without seeing the pack by taste which supermarket it came from.Any tips would be gratefully received. By the way it might be useful to you to know the lady at the autistic trust told me a lot of autistic children have a sensitivity to their tastebuds regarding salt and things like garlic so where flavours like them are used in things like soup their tatsebuds are over sensitive to it thats why they dont like a lot of ready made foods.

Oenone profile image
Oenone in reply toanniehunny01

If any person is not willing to do a food 'regime' you can't make them. Matty isn't doing too badly in my opinion - can you get him to move more?

My daughter is quite sturdy though probably not actually overweight but she has not eaten any fruit or vegetables (apart from tomato ketchup) since she was about 7 - and the last thing I could get down her was coleslaw. She eats a sandwich on a school day for breakfast, usually with meat in. She has a packed lunch, again a meat or tuna sandwich, occasionally crisps or a non fruity cereal bar and a couple of biscuits. Water is her drink of choice until after school when she might have coffee, tea or milk. She may have cereal after school, Special K or Crunchy Nut cornflakes, dry but with milk in a mug.Evening meal may be similar to ours but meat and carbs are preferably on a separate plate, definitely not touching and no veg! She doesn't really like non chocolatey desserts.

She isn't too bad at sports at school but somehow never seems to quite fulfil her potential - I am not sure why - too many people involved maybe. She would like me to buy some sort of exercise machine but I feel we haven't got the space and would rather we went to the gym together but being around other people is an issue for her. Getting back to food - anything spicy is a no no for her, though she is quite a carnivore and can eat stronger flavoured and tougher kinds of meat than I and my other daughter really would rather not eat. She can usually tell if an item is not her preferred brand!

anniehunny01 profile image
anniehunny01 in reply toOenone

thanks for the advice. I will keep trying i am hoping with age his taste will change I am lucky in some ways because he does not like fizzy drinks at all he only drinks milk or water.We have managed to get him on to skimmed milk which has helped,his lunch box consists of a marmite sandwich pack of hula hoops a cake bar and a bottle of water thats every day!!! I ask him sometimes if he would like something different but he ponders for a bit and then says "why would i want something different i like it as it is" I cant argue with that can i? lol

Oenone profile image
Oenone in reply toanniehunny01

That's not too bad at all really. My daughter has limited tastes and yet does sometimes get tired of the same old same old but is hampered by fear of different flavours and textures. She enjoys eating stuff she likes but if in a place where there is no choice (eg.guide camp some years ago, a school holiday last year) she will go hungry.

One thing I have to offer that sounds a bit pessimistic is that people with Asperger's (in my opinion only) don't seem to change or 'grow out of' 'bad' habits easily. if at all. I know that in my early childhood when I was surrounded by lovely older, mostly female relatives who were strong role models but quite relaxed in their child care techniques (Manchester respectable working class!) I kept hearing them say, 'don't worry, she'll grow out of it' of me and my cousins. NTs tend to but maybe those on the spectrum need some strategies and I'm trying to find the strength at this comparatively late stage to bite the bullet with my daughter and give her some help!

anniehunny01 profile image
anniehunny01 in reply toOenone

you are probably right i suppose my taste hasnt changed that much over the years either. Matty has been on one school trip so far and lived on toast the whole time apart from when one of the helpers bought him some shreddies i think she felt sorry for him.Oh and he ate a jacket potato with cheese and i thought thats great but he has not eaten any since because i dont cook them right according to matt lol.He is due to go to france on another school trip in june so that could be quite interesting,i think he will probably shed a few pounds then again he might suprise me.

ToniManifesto profile image
ToniManifesto in reply toanniehunny01

Thank you Annie. I'm the Grandfather and I'm at the beginning of trying to identify my 3 year old grand son's behavioural problems. I'm delighted at the progress Matty is making. My biggest problem is trying to get my daughter to seek help. She is adamant there is nothing wrong.

anniehunny01 profile image
anniehunny01 in reply toToniManifesto

hi toni i do sympathise with you but believe me when son was younger my head was firmly buried in the sand i would not except that my son was not perfect.My husband kept on at me day and night .May i ask a personal question is your daughter with a partner because maybe you need to approach him instead if you can as having one parent on side may help you to persuade your daughter to get some much needed help. I think you should contact the autistic trust in your area and tell them of your concerns and see if they can help you.As i said before people at the nursery could probably help you as they deal with lots of children and are trained to spot these things they did with matt on the first day so please dont think your grandson will be excluded from everything you just need to be dogged with your detemination and you dont sound like someone who gives up easily so your grandson is very lucky to have you fighting his battle for him.

ToniManifesto profile image
ToniManifesto in reply toanniehunny01

My son-in-law has the same attitude as my daughter. Actually he is worse in that I think he does not really believe there's anything wrong. But my daughter has said to me a few times when we go to something together "Why cud HE not be like them kids"? She KNOWS! But I wish she would go to the doctor. They both work long hours and that's why I am so aware of the problems. My wife hates the matter coming up and walks away too. I know it's all going to come to a head when he goes to Nursery (Pre School). Because he WILL injure another child or a teacher. Or run off into the street. I just hope somebody persuades my daughter to get help soon. I'm even contemplating going to the doctor myself. I know there's a confidentiality clause there. But at least if it gets into the surgery's records something will have to be done. Thanks for your concern & advice Annie.

anniehunny01 profile image
anniehunny01 in reply toToniManifesto

I think it is very difficult when both parents work. We took a major decision and i gave up full time work and i applied for carers allowance and disability living allowance it was a bit of a struggle at first but now I am home when my son is and we have a lot more time together it has made a huge difference to his behaviour and he seems much more settled than when i was out at work all day.I think a lot of it is because i was so tense all day worrying about him it carried on at home and that was doing damage to the whole family. I know it is not an option for everyone but when we added up the expense of child care together with the cost of going to work (travel,lunches etc) we did not end up that much worse off to be honest.Also i found i had more time to cook family meals and that saved us a small fortune on shopping because i used to end up buying ready meals conveniance foods etc.Which brings me to the diet thing my son has been so much better since i have gone back to home cooking even making your own biscuits as you know whats going into the food,its good fun a we all do it together,make a huge mess but we are happy.His favourite thing is bread making as he loves to knead the dough and watch it rise. Perhaps we all need to go back to some basics it certainly worked for me.

ToniManifesto profile image
ToniManifesto in reply toanniehunny01

Thanks Annie. You would think a 3 year old would love Jaffa cakes but he hates them. The big battle with me is to convince my family to recognise that high pitch screaming 12 hours a day is abnormal. Diagnosis will be the start of resolving this issue.

anniehunny01 profile image
anniehunny01 in reply toToniManifesto

i so hope you get the resolution you want as i can tell you from experience when it is all out in the open so many other things fall into place and life is so much better for everyone involved.The one thing i did not mention before my son goes to mainstream school and they have been brilliant with him.They have learnt to understand how he ticks and do give him a lot of time on one to one.Matty although diagnosed is not statemented and i have been told that statements are being phased out altogether next year so you do have to fight for everything unfortunately.i am in the throws now of approaching the secondary school where he is going to make sure he gets the support he is going to need it is a huge change in all our lives and i hope we can do it smoothly!!!!

anniehunny01 profile image
anniehunny01 in reply toanniehunny01

i meant to ask ,what is his diet like,what sort of foods does he eat? myself and others may be able to give you some tips for when you have your grandson with you.

ToniManifesto profile image
ToniManifesto in reply toanniehunny01

Annie I was going to go off this site this morning because it was no use talking to anonymous people but can't talk to my daughter. After today I KNOW DEFINITLEY that my Grandson has a spectrum/autism. He went into almost epileptic hysterical fits today to get to a little dog! Me or my wife have not seen this before. Yet I have talked calmly to my daughter about him within the last 4 hours. Never sharing the truth. She hides the truth. I cover the truth. But I know tonight that at 3 year old, my Grandson could be a dangerous person to himself, to his immediate family, and to the general public. He has the strength of an eleven year old boy. But he is only 3.

anniehunny01 profile image
anniehunny01 in reply toToniManifesto

i probably should not say this but it could be an answer and i dont know how far you want to push but while the child is in your care could you present yourself at a local a&e dept and say you think he is unwell and see what happens from there.Tell them he has been screaming uncontrollably and you dont know what to do it could trigger some sort of reaction then your daughter can't deny something is wrong if she is confronted by a professional opinion. Maybe its the answer i don't know what else to say that can help.It sounds like she is going to have to face it when he goes to school/nursery isnt she?

I know that they can be strong i had the bumps and bruises to prove that when my boy did not want to go into school it hurts not only physically but mentally. My poor hubby used to get some strange looks when people noticed my bruised arms,legs sometimes my face.I looked like i had done ten rounds with mike tyson. You sound a desperate man and i would like to keep in touch even if just chatting about how you are feeling i hope it helps.

ToniManifesto profile image
ToniManifesto in reply toanniehunny01

Thanks for that advice Annie. I would not do that because it would cause too much distress to my daughter. I suppose I am guilty in a way of hiding this problem in that I have discussed this extensively with my family. My wife and my other children and my extended family all say to me not to upset my daughter by confronting her with my Autism opinion. Amazingly I think my daughter knows. I think my son in law is covering it up even more. Annie I have 8 children & 9 Grand children. I have worked with the mentally ill albeit many, many years ago. I have worked as a male nurse in my twenties. I KNEW when my Grandson was 12 months old that there was a problem. Simply because I have had so much contact with babies & children. A hug, a shoulder, a distressed infant and I could ALWAYS! Tell what the problem was. I'm one of those people who sit in the doctors surgery and some random 3 year old comes & sits on my knee! It happened to me 6 months ago and the mother was so embarrassed but went into a fit of laughter. Yes the evidence of the violence from my Grandson is the same as your experience. Also on his body. His legs are covered in bruises but that's normal for most lil boys. But he has a permanent lump at the back of his head which is caused by a hysterical fall he does when he can't get his own way. I have serious health problems myself and I have decided that at my next appointment with my GP I WILL bring this matter up. I know he is going to reply that because of patient confidentiality he cannot discuss the matter with me without the presence of the next of kin of the child. But I think I will hand a letter to the doctor. If it's in writing he/she Must act to protect the child. Hope my daughter does not turn against me for doing it.

Springsong profile image
Springsong

Hi Toni,

I have just got my 3yr old daughter diagnosed with Autism after a year of tests & assessments. Like your Daughter & Son-in-law, my husband & I were initially in denial that something was wrong & simply thought it was her age, when she reached 1 we started thinking 'maybe' but it was only after her younger sister was born that we really started to notice that something was 'different' & it was our Health Visitor that put her forward to paediatrics last June. We then got overwhelmed with all the different tests that were requested & questioned the need for most of them (Hearing tests, bloodtests, eyesight tests, speech therapy, playroom therapy) & I had to constantly remind myself it was in the better interests of helping my daughter (I often felt guilty & ill taking her to the different appointments).

The traits my daughter has are classic traits & I now realise that she has had them all along, she has always rocked when sitting down unless in the car, she has a tendancy to stare into space, she has no speech only noises which are typically 'clicks', 'squeals' & 'babble', she twists her hands about in the air & flaps her arms about, she jumps around, she doesn't acknowledge pain to the same degree as her sister if she bangs her head/bruises herself/falls, she gets obsessed with how people stand/sit & will physically pull/push that person to get them to alter their position (becoming a bigger problem as she gets older/stronger/taller), she doesn't play with toys the way other children play with them but rather 'studies' them & given choice will play with household items in place of her toys (she loves keys, empty bottles, cups, bowls, brooms, cushions & paper).

I don't know how you would get a formal diagnosis without seeing a professional but you can find a lot of information about ASD symptoms on the NHS choices website.

ToniManifesto profile image
ToniManifesto in reply toSpringsong

Thanks Springsong. I have many other Grand children to compare O to. I had a meal with my family today who live 200 miles away. Two grandchildren & 2 we were minding, all under 4. We could not have had a normal meal in a family setting today with my Grandson O. We could not have played in the sun in a large garden with a child's tent. With 4 adults there we would have to mind O like 4 bouncers would mind a drunk outside a pub. I can't explain all the problems we would have. I can describe one good thing. The four under 4s we DID have sat at a table with 4 adults and shared a meal with us. If O was there we could not have sat down at the table.

MaryKid3 profile image
MaryKid3

Toni Manefesto. I've read your blogs on here and they remind me of when my son was only 3 years old. He was big for his age and strength to match. Sadly, he's now 22 and its taken me all this time to get anyone to listen, to admit he is in the austistc spectrum.

When my son started nursery 19 years ago, he would sit under the table and not interact with anyone, including teachers. When I left him in the mornings at the nursery door, he'd cling to my leg screaming and shouting, teachers pulling him away and telling me to go - normally with tears streaming down my eyes. In those days, not unless it was obvious to look at a child and see severe issues, was anything ever recognised. The school had a child pyscologist come in and from there on (was never allowed to see the report) everything was down to learning difficulties: emotional issues (I just got divorced in those days). Everytime I asked for tests to be done for dyslexia or to see if there was something amiss, I was told not to "tag" my child! Overall, when he came out of school each day he was a rocket of emotions, which he had built up during day as he sat quietly. One day when we lost his favourite toy on a bus, the screaming. kicking, was just not normal. I went and bought him a replacement in desperation but he knew it was "not" his and so I trawled the lost property of bus stations the next day in desperation as there was no consolling him. There goes the grace of God, a bus driver found it and when I took him with me to collect it, he knew instantly it was "his".

My only saving grace was at 5, I put him into rugby and there he could talk on the field - brilliant player from a young age. So, from 5 - 13.5 years my whole life was taking him to football, rugby, running where he totally excelled and could run our his aggression. During all these years he was so fussy with food - wanted the same thing daily and wouldn't eat if he never got it. THen suddenly, he change to something else he'd eat and nothing else. Always when he came home from school, had to sit alone for a few hours in his room to clear his "head." If he got really frustrated over something, he'd punch his face with his fists / bang his head off walls - floors and scream his head off. As for tell him we were going to go somewhere and then never go, that I learnt early was a no go area.

Sadly, at 13.5, class 1 diabeties struck. Now, this is where he reverted to being 5 again. Not one doctor or health professional in the 4 years that followed, every picked up his arrogant, angry and refusal to adhere to anything they said could be anything other than "due to me moddy coddling him." At 15 he became a school refuser, depressed and fell down a black hole. Of course, my fault as a mother. I remember him one day getting angry in the car to hospital so he put his feet up and kicked the glass out of the front of the car. Overall, over the next few years banging on all doors for help, each one was slammed in my face and I to be made to feel the only thing wrong was my parenting skills. I did eventually give up and tried to carry on alone to 2013.

Cutting a long story short, at 17, he started to have diabetic hyposon a regular basis which caused the next round of problems. Then at 18, (2008) had a major seizure when we were on holiday in America, falling from his 6ft 3 height, smashing his head off everthing as he went down to the concrete floor. The paramedic said "Is your son epileptic as this was no diabetic hypo." I saw doctors/hospital upon return and the answer was always related to diabeties. Then in 2010, thankfully with a parmedic present, he did go into a full epileptic fit that hospitised him for 6 weeks. This last fit totally brought out another presonality in my son and very very difficult, as he became so controlling within the home towards me and his other sibilings: his temper tantrums have seen holes in doors/walls etc. The hospital has now said he has a "low" seizure thresshold and stress normally sparks something off within him. I read an American report a few years ago when I was looking into why he suddenly was starting to have so many seizures and it was stated, there was a link with seizures and autisim yet we only read it in UK papers last week.

As no one over the years as stated would listen when I said he had "autisc ways" with age my daughters and my life have been a daily walk on egg shells. I've called the police so many times over the years and they've always said "Your son is highly special needs, even the behaviour of somewone on the autisic spectrum" but would any professional listen? My son says when "the black tunnel" comes, he has no memory of any distruction he causes - others call it blind rage but it's highly dangerous and very scary for any of us within his path. I'm the main person his anger is always directed at but then I am the closest person to him. Thankfully, he's never hit me but smash and throw whatever he can lays his hands on is just scary for any family in this situation.

Only this year 2013, after he got very depressed, screamed he was going to hurt himself, to get him help, that I finally picked up the phone and asked for him to be sectioned. I knew it was the only way anyone would listen, take notice and maybe, after 17 long, hard stressfull years, get answers and some help. Within 30 seconds of being seen by a pyschartrist, he said without a doubt, he was in the autistic spectrum - High Functioning Aspergers. He's seen three more since via mental health and they all say the same. The sad part is that he looks as normal as anyone else and I think this is where 3/4 of the problems lie. Teachers and doctors I've found out this year aren't trained in the wide autistic field so kids "tagged" for all the wrong reasons. This is no good, as for those with Aspergers, with help when young, can live normal lives if they understand more of how they think and operate. Mental Health has also stated, those within the Autistic spectrum shouldn't be lumped into Mental Health as they are not mental and it's a totally different filed altogether, which I agree.

Where on the slow slow path of diagnosis via mental health and personally, to some this may sound harsh but I'm so tired and exhausted, especially as a lone parent with no back up from his father ever, am to close for son to listen to anything I say, always a fierce argument with things flying, that I want him to be housed somewhere residential, where he can get the help he needs. At least at just 22, even Mental Health states, he's still young enough to get his life on track. Sadly, with all that has happened to him since 13, his lost all his confidence and now even more sadder to me, when he should be out there having the best time of his life, sits alone, day in, day out, in his bedroom. He loves people, which I do find strange but just doesn't know how to interact with them socially without having to get drunk. This then is a catch 22 as his body language comes across all wrong and becase of his height attractst trouble.

The moral of this strory is for any parent living in denial that they may have a child in the autistic spectrum, some are worse than others of course, is that the problem doesn't go away. The bigger they get the worse they get and in my case, very frightening to handle. So they are different but there is nothing wrong in that: I'm certainly after everything not ashamed of my son and never will be. Life has changed: there is still many ignorant - arrogant people out there but forget them, they've their own issues. I so hope and pray your daughter wakes up and anyone else in denial and istens to you before something nasty happens.

ToniManifesto profile image
ToniManifesto in reply toMaryKid3

Thanks MaryKid for that. Firstly putting on a post as long as yours can be very counterproductive in that everyday people don't read manuscripts. You gave me very good advice about my Grand son and I am eternally Grateful for that. Because I can see a connection between your sons condition and future prospects for my grandson if we cannot resolve the problem when he is 3 and not 11 or 13 or 17 or 20 or 22. Exactly the reason you & I are communicating. But I give you this advice if you want to connect to others: Write down in handwriting or save in word what you have written in this post. And when communicating with others in your attempt to help your son refer back to those excellent points you have made in this post. Interesting you refer to Rugby. My son-in-law played Rugby and is now a qualified Soccer Coach. He is a giant. And a gentle giant. He is O's Daddy. We must continue this post for both our sakes. Keep it short. Thanks so very much.

ToniManifesto profile image
ToniManifesto

Mary can I get back to you over the next few days? Your post is long and complex. But I definitely see connections in your situation & my grand son's condition. I just need time to consume your information.

ToniManifesto profile image
ToniManifesto

Hi OneOne. Well I'm not happy to admit this even though I knew for the last 2 1/2 years that O--- was on the spectrum. I approached his GP & his Principal teacher & was surprised to get their co-operation. His Principal had been trying to get my son in law to fill in a form to have him assessed but the form never came back. She said she had become extremely concerned about his behaviour & hurting other children. She said she would talk to me in private & without the permission of the parents even though she knew this was breaking all the rules. It takes 15 weeks to get a child psychologist assessment at the nursery. And my son in law was given the form in early November and had not returned it by late January. I was totally shocked to hear this and very upset. I had a 45 minute conversation with the Principal who was very sympathetic to my daughter's predicament. She said my daughter had no comparisons to make with other children because she had an only child. And that my daughter was as vulnerable as my grand son. She was in denial and needed as much, if not more support than my grandson. Then I got another surprise when she told me she had suspected a spectrum disorder the first week he arrived. She had taken it on herself to ask a child psychologist attending another child in his class to observe O--- & this doctor provided her with an opinion that O--- was in the ASD. I was so happy that someone in authority was listening to me where no-one in my family circle was. My Grandson is in ASD but my daughter or son in law will not discuss this with me. He is having his third Child Psychologist appointment tomorrow. They have told me it is a speech therapist appointment. But they have both taken off work tomorrow and he had his speech therapist appointment last Thursday. There is nothing wrong with ASD. Or influenza. Both need appropriate treatment & resolution. Detection of ASD at 18 to 30 months is guaranteed to resolve 90% of the issues by 16 year olds. And 18 to 26 year olds would not have ASD symptoms. But as usual politics put money available before children. And short term targets are the next election funding rather than funding required to research ASD. And to provide three times more Child Psychologists than now. And of course other supports including one to one teachers, nursery & primary play facilities, magnetic & building toys. Sorry for going on a bit. But I am excited about my Grand son's future now. Two years ago I was in absolute despair. He sat with me on Friday at his Great Grandmas house. We both had the same meal. The same drinks. The same table. The same chairs. He looked up at me. At last somebody understands me. I'm equal with Granda Tony. He understands me. I always did. I didn't have to ask him to take my hand. He took mine. Two greasy hands from sausage & chips. I think O--- will have more confidence from that one meal. Everyone else misunderstands my Grand son. And he knows it. I've just got to persuade my family & my community to try to understand & accept ASD.

ModifiedMommy profile image
ModifiedMommy

There is nothing "wrong" with your child. Or any other child or adult on the spectrum. Please be cognizant of your wording, as it can be problematic if you're careless with your words regarding those who have autism.

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