Published on 12, July, 2020
Hi Everyone,
I'm Angela & I have just joined this site, as I am looking for advice and support.
My son is 11 years old and we have recently had a referral to CAMHS, my husband and I both believe our son is on Autistic Specrtum, we have the support of the Headmaster at school also. Our GP is the child specialist in the surgery, with years of knowledge, so the fact he referred him, meant that he didn't think we were mad, and he agreed he felt there were Autistic symptoms, which needed an appointment with CAMHS. He also told us not to get our hopes up about an appointment as they refuse more than they see. Our GP's initial referral to CAMHS was declined, until we submitted it again, with a letter from School and also a supporting letter from us documenting meltdowns and incidents. The day the letter came in offering us a CAMHS appointment, I cried my eyes out, finally someone was going to see us.
Our son was seen by a Psychologist at his initial appointment, around a month ago, and she has decided to submit him for a Clinician appointment, whch, we have been told will be where they decide if they are fowarding him to be assessed for Autism. The waiting list for the Autism Assessment is currently 7 months, and he won't go onto the waiting list until the Clinician has seen him and decided this is the way forward.
Our son is in his final year at Primary School and I am terrified he will sink when he goes to Secondary School next year if he does not have any support in place.
We are in a postion where we have a child who has such high anxiety, at school he is a model pupil with his behaviour, he saves up his anger and meltdowns for here at home where he feels safe, since Thursday of last week we have had a horrendous time, we had been away on holiday, and I expected there to be a fallout from this, as we have become aware of "trigger points" causing these meltdowns. I had to speak to CAMHS yesterday, as no appointment has been received as yet, they also let me speak to the "Duty Response Team" who gave me some advice.
My husband and I have researched this greatly and we believe our son to have all the traits of PDA, We are not qualified to diagnose this obviously, and are very careful not to "pigeonhole" our son, but he ticks all the boxes for it. CAMHS have made us aware they will not diagnose this. We really want support and help for our son and for us.
I feel I am drowing, watching my beautiful boy struggle, he cannot control his anxiety, or his anger. His self esteem is low and I feel close to breaking.
Sorry for the ramblings.
Angela
Hi Angela,
I'm sorry about the 7 month waiting period, that's a very long time to wait for an assessment without support.
You might be interested in looking at the Autism Services directory here on the site, to see if there are any non-government support services available in your area that would help in the meantime. You can find that here http://www.autism.org.uk/directory.aspx
Otherwise you could call the helpline and see if they can provide some alternatives - the number for the NAS Autism Helpline is 0808 800 4104
There's also a page on meltdowns here on the site - http://www.autism.org.uk/about/behaviour/meltdowns.aspx - with advice and preventative strategies, as well as links to further support and information.
Hope this is of some help,
Ross - mod
Hi Ross,
Thank you for the info, it is greatly appreciated.
We have been seen at our initial CAMHS appointment a month ago, they have put my son on the list to see a Clinician, who then sees him and decides if he has to be placed on Austism Assessment waiting list, which is currently 7 months.
He is our only son, and my husband and I feel helpless, to be honest getting the CAMHS appointment made us feel that finally we may get help.
This is impacting all of us. My son first and foremost, but also both my husband and I. It is so stressful, I am also currently dealing with the recent death of my Father.
Sleep is not something I have had a lot of since last Thursday when things took a turn for the worst with my son's meltdowns etc.
I will go and read the page about meltdowns.
Thanks again for replying.
Hi Angela
i was lucky I know ,my son was diagnosed after a long wait too. Only parents guardians and carers truly understand what's it's like to have a child with Autism. However the support out there to help them is all to do with helping you cope . This however has a silver lining . It means that nao matter how long support takes to arrive you always have the Parents to Parents NAS helpline available to you. They can get you through anything believe me. Don't let diagnoses, hospital visits etc rule your life with your children. We know what your going through please use P2P on0808 800 4106 . A national autistic society parent will call you back at a time to suit you. All you need to do is leave name and number it's free and someone calls you back. Everyone is just like me and you . :-)
Thank you for this.
I have felt totally unsupported until recently. The Psychologist told us to step away when our son has meltdowns and is hurling abuse at us, which isn't really an answer.
My husband and I have been dealing with this on our own for so long, before we sought our GP's help for a referral and only a select few people actually know what we are dealing with, as I am a very private person and don't like sharing my business with everyone. It's not that I'm ashamed, far from it, I just find it easier, maybe it would be easier if everyone did know? I don't know!
To the outside world we have a happy, kind, loving, sociable, considerate child, who has impeccable manners and is very well behaved. My closest friends were shocked when I told them, one of them is his Godmother and could not and still cannot comprehend this is what we are dealing with, as she has never witnessed anything.
Our son onky ever has meltdowns in our home, when my husband or I or both are present. Which I am told is because this is is safe place, he feels safe and secure as we are his parents and we love him no matter what.
I will certainly think about calling NAS helpline. I really appreciate you replying to me.