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Living with Autism

(10 Posts)
HAMK Wed 06-Apr-16 19:02:52

My daughter is 13 in June and is in her second year of high school. She was referred our local Child Development Centre at the age of 4 1/2 yrs.
Every year we went for the appointments but she wouldn't talk to the doctors. So they would want to see us the following year. Each time we saw a different doctor which made is worse for my daughter. We were eventually told she was borderline Autistic as she did not have all the symptoms a autistic child has. This went on each year until two years ago when we met a wonderful doctor who actual took time for my daughter. She always sits on my knee and whispers the answer for the doctor in my ear, then I tell the doctor, sometimes I had to explain what the doctor said.
Thanks to this doctor after 7 years we are now getting some where. She has been excepted for the Complex Case Panel, and we are just waiting now. The school she is in now knew nothing about her problems.
After seeing CAHMS with my son who cannot cope with his older sister, I was told my daughter has selected autism and she misbehaves so much after school because she hold; ds it all in at school and releases it all when she gets home.
School now after her struggling for two years has took notice and put things in place for her. This does help a little but she still struggles. At least she has someone in school who she can go to who understands her if she is not coping .

soliyellowsun Sat 09-Jan-16 02:22:29

I feel your frustration Lucie. You've been through so much and you sound exhausted. I run a 1 to 1 support consultancy to help parents who are struggling with their child's behaviour. I'd be happy to have a no obligation chat to see if we can come up with a plan to help you get your family back on track

lucie44 Mon 26-Oct-15 21:32:47

Thank you so much for replying! I have just started a cygnets autism training course last week so I'm very excited to see what the nest 5 weeks bring!!! I'll let you know the pre course meeting and session so far so good! smile

Essaye Sun 25-Oct-15 15:21:27

It's not easy having kids with autism, and often other accompanying symptoms like sensory processing. Good news is you all care and are looking for help. You might try going back to your GP for some help. Has anyone been on an early bird plus course from the NAS? this could help if you need help understanding what's happening with your child. Talking to other SN parents too. The mumsnet SN chatroom lot have lots of personal experiences that might help. Breaking things down into specific issues to handle can sometime help too. It's easiest to see the negative things, but there will be successes too and they really are precious when they come along. Happy to share my general experiences of my ASD lot

lucie44 Tue 01-Sep-15 12:14:37

Hiya, my son is 7 1/2 I found out he has Autism in April 2014 it was confirmed, my problem is since my dear husband was killed in a motorbike accident November 2011 and the nursery our son was at said he had some "behavioural issues " at the time, meant he has truffles to fit in since toddler age. I then met a monster of a man 8 wks after my husband was killed and was with him for a year, all the time he bullied my poor boys and I was helpless in protecting them. I ended the relationship when I found out I was pregnant Jan 2013 and I could finally concentrate on my children, my eldest has had 10yrs counselling due to the upset caused from everything but not enough has been done for my son with Autism! I feel like I have exhausted all avenues with camhs being very unhelpful, an Autism centre in croydon who couldnt help because of where we live and i am so stuck now of wherw to turn for help and although the school is helpful most of the time the parents aren't and typically have named my son as the naughty child which means he very rarely gets invites to parties and play dates, all of which is soul crushing for my son and to top it off I'm awaiting more private counselling because of everything that's happened I am utterly depressed and I feel like I take most of my anger out on my son with Autism because of his behaviour which is daily exhausting, unpredictable, violent and verbally abusive which now leads to more upset and nights laying awake with guilt because I haven't got any patience left and I constantly feel like im letting my little boy down!!!! Any advice would be greatly appreciated because I feel now like I am at my whits end!!!!! Thank you, Lucie x

woo282 Sun 20-Jul-14 23:36:29

Hi there. My son was diagnosed at the age of 3 . like symptoms you mention speech. ,was main problem . shopping was a disaster the tantrums and the looks people gave me. I learned to graphed my sons every day actions as in time habbiys he had would diasapere and a new one would appear . etc one day he would come off nappies the next he adapted a new habbiy . soyour son doest and to be bad to have effect of autism. kp at them and good luck . your not alone. Xx

DrCoconut Sat 13-Apr-13 20:06:28

DS1 is 14 and we are on the verge of a diagnosis from CAMHS. Finally everything makes sense and I can stop blaming myself. Part of me is relieved because despite it being a disability we now have a reason for his odd behaviour and can hopefully explain it rather than face judgement over it.

redwhiteandblueeyedsusan Wed 19-Sep-12 22:54:16

h thinks it is a load of rubbish himself. he can not see ds's behaviours... probably because he does not live here anymore. he has not gone sos far as to suggest munchausens though shock

we are going through the diagnostic process, he got the hump because I did not let him help fill in the cars form... he can not see anything wrong so would have ticked no problem... despite having to go back to the kitchen to fill ds's bowl to the correct level of milk, or juice. it ould be less lonely if he could see a problem and suppot the process

I am worried that the school think there is not a problem because ds is not overtly badly behaved at school, but he is withdrawn and does not communicate his needs. (speech therapist observation)

I have to take him to the supermarket sometimes. it can be a nightmare.

GoldPedanticPanda Sat 15-Sep-12 22:45:52

No I have no family support, infact my family don't believe it despite a dx from CAMHS and numerous letters from paed, HT, EP, all agreeing. My ex was the icing on the cake though, he reported me to SS saying I had munchausen by proxi syndrome for even suggesting my son was on the spectrum - even though his brother is severely autistic and his cousin is also on the spectrum, so autism is quite prevalent on his side!

A2ndVoice Sat 15-Sep-12 09:57:08

Do you feel that not enough is being done for children and adults on the autistic spectrum? My son is 9 years old, but the challenges I find is that when it comes to being in the public, his behaviour is seen as naughty and I am a bad parent. His sisters are fine, but for him. His sensories is a problem, that causes total confusion and misunderstanding. Does your family and friends give support and understand your child or adults.. Hidden condition?

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