I am new to Mencap and have been only recently been told by son, that his 6 year old daughter was not misbehaving and had gone bad to worse, as she is Autistic!
She is 6 and half years old, was born 9 weeks premature, she was late developer in everything and consultants passed it as a late developer due to being premature!
She has one word language and I kept pushing my son and daughter in law to ask for a speech therapist to help with language, because at 4 and half years age only word she said was "dadda" and that was for everything daddy, mommy, food and toys! Her pointing and language were misunderstood and she would become frustrated and melt downs were hard to cope with! Now have gone even worse!
She was diagnosed with autism over a year ago and at mainstream school she is having some lessons at one to one.
Since lockdown she is missing school and I have been doing Nursey level work with her, as I was shocked to discover she has little pencil control and apart from.letters that look circular in shape she cannot write straight lines and has about 1 minute concentration span!
I would like to know what teaching material is available, what methods can be used to stop to discourage spitting, hitting and biting!
It's only because of her uncontrollable behaviour my son broke down to me, otherwise he had not wanted me to know because it would hurt me that the one and only grandchild, I have is Autistic!
I wish I was informed earlier and I could have helped! Both my son and daughter in law have been suffering alone and keeping themselves to themselves, because they cannot tolerate her behaviour in public!
It would be very beneficial to me to know, how other parents are coping and what techniques they used. I know from experience of my 3 children that no one child is the same and all have individual minds and need to be stimulated according to their interests. When children have speech, it's not master science to keep them happy, but very hard when you don't know what your child wants or when you tell them "no you can't have that its dangerous!"
I have recently babysat her 3 times and gave respite to my daughter in law. My granddaughter is sooo beautiful; however a handful! I am crying out for help to help her!
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Zahri
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My son is now 19 with the mental age of about 5 with autism and anxiety problems, so I can only advise you from his prospective as they're all different, and it makes it twice as hard to understand.
When we realised there was an issue with our son, it took us a long time to accept that the future was not going to be what we thought. So its not surprising that your son, DIL and you are going through a tough time. You have to go through a period of mourning and acceptance. It took us about 3 years to understand the process. Having a child like your grandchild is so hard, but when you 'get it right' and are rewarded with a smile or a giggle, it's worth so much more :).
If someone asks me about my son, I explain it as being suddenly arriving on a different alien planet every day; inside his 'spaceship' he is content but as soon as he steps out of his comfort zone, things just don't make sense and as soon as he thinks he's worked the situation out and maybe found forms of communication that work, things change. After all this time, I do know some things that work, but I can't always predict when he's going to get so stress out that the fight or flight reaction comes into play. This resorts him wanting to be left alone, aka violent outbursts (usually shouting and gesticulating), stimming that means him self harming that cause bruise etc. The future will definitely be different but there is so much I wont have to worry; him getting into debt, job stress, exams, learning to drive, getting in with the wrong crowd and the list goes on. I say all this to let you know that your sons and your feelings are natural.
If your granddaughter has limited vocab, perhaps understanding it's difficult for her to get across how she feels or what she wants, so it could be that the bad behaviour is a way to express he emotions or a way to get attention. Maybe pictograms cards would help her to tell you what she wants/ how she feels; that you can give her and she can give you. It must be so frustrating not to be able to communicate efficiently.
As for writing, you could try doing it with finger paints and dot to dot writing - start off with her following dot lines and shapes, then progressing to shapes then her name etc. When she's got the idea of the writing shapes, maybe progress to thick pencils.
Learning always is more effective when you don't know you're doing it or when it's to do with something enjoy, and it's the same with children with autism. Many kids with autism have a problem with concentration, so start start with short periods of activity and then let her have space and then try something else.
I find that giving my son some control in whatever we are doing definitely helps; it doesn't have to be big (eg beans or peas etc, write your name or write numbers etc) but it seems to allow him some sense of being centred.
Play is also important, he loves to build Lego. We do it together and have progressed me helping him to follow the build booklets - I have to reveal only 1 page at a time, but he knows that if he doesn't follow the instructions then we wont get the desired product. Our latest venture had 13 bags and a booklet as thick as a novel, lol. We did a bag a day (when he was in the mood) and I got him to find the appropriate bag and even managed to get him to follow instructions when they where repeated (9 bloomin' engines!). It took us about 3 weeks, but he did it. It was good for his dexterity, concentration, interpreting instructions, number recognition etc
Baking is another good activity as it teaches maths (even algebra), experimenting with food (many autistic people have a problem with 'mouth feel'), responsibility, pride in their work etc.
As for bad behaviour, I've found that ignoring them can work. I usually remove any items (toys etc) and anything that could be dangerous and leave the room. I used to put my son on the stairs until they calmed down. I did know someone that got so fed up with their little one being having tantrums in shops, that she threw a full on '2 year old' one herself, on the floor and everything. I think her son was so shocked, he was 'good' for the rest of the shopping trip. Now I'm not suggesting this, but may be distracting would help.
As for being worried about bad behaviour in public; you can now get a sunflower lanyard, that many people now know that this means that the person has autism. A social worker once suggested that I could have cards printed (I think you can buy pre printed ones now) to explain your grand daughters condition to 'disapproving' strangers. It may help to tell staff when you are going to a cafe etc and they will usually understand. You do tend to get used to this and I find myself talking loudly to my son, so that passers by realise that 1) he has an issue and that 2) they are being discriminatory, rude and intolerant.
To get the help that she needs you have to become her advocate and make a bit of a pain of yourself (or your son and DIL do) and keep asking about different therapies, education, speech therapy etc.
Have a look at Family Fund Charity for help with all sorts, from computers to holidays (they helped with paying for a garden fence, so that my son couldn't escape). If your local authority thing that your granddaughter needs further help (SEND dept), then her school will get additional funds to enable this. If she is able to get DLA (just because she may not get it at the moment, her condition may mean that she will be eligible for it as gets a little older), then there are other Benefits that her family will be able to claim.
Sorry this is so long, but so many families are left to their own devices and never find about some of the help that is out there.
hi sorry that you have ALL been struggling alone ...have you tried just gently stroking the palm of her hand as some people find that soothing ...sensor lights are very good as well ...hope this helps a little ...love Rosie x
Do you have any contact with the school for support, this is such a challenging time for everyone. Contact your GP for a chat explaining your difficulties, I’m sure they would be able to suggest ideas where and how to get some help in managing her behaviour. If you ring surgery they usually give you a time when Dr will ring you back, I think this would be my first contact for help. This situation with Covid is creating behaviours in the best of us, never mind someone who is autistic who can’t understand what is going on. I feel for you all hope you get the help you need.
Somehow a lot of triggers are to do with unbearable sounds, never being able to walk without hearing shoe tapping surely must interefere with linguistic development, mothers' clomping heels, drills in the road, cars revving engines etcetera, and also other things making these children bodily uncomfortable such as chemical cleaning agent smells, pesticides in foods and wrong diets, and rough textured synthetic or wool clothing.
I wonder if ear muffs would help ? Maybe organic vegetables rather than pesticide ones ?
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Hidden disability 
Hisson
advice needed 
supported living - poor communication with family
Support During Lockdown for people with Learning disability.
