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Asd assessment advice please(8 Posts)
My ds2 is 11 his dxs at the moment are severe adhd sensory processing disorder ocd anxiety global development delay and he also has social communication problems. His meds at the moment are concerta xl sentraline and melatonin. He is in mainstream at the moment but we are waiting for his placement at a special school (God I hate that term but don't know what else to call it).
He has had 2 asd assessments 1 4 years ago just after the criteria changed and I was told if it had been the old criteria he would have had an asd dx. He had a second 1 last year with camhs and they said they were shocked as he didn't meet the criteria again. Partly due to his social interaction which me and school have worked hard for years to help him with.
During a meeting school mentioned how camhs didn't contact them as part of the asd assessment and I am wondering if this is normal as school seemed surprised with this. We have had other professionals say he has it but it seems to be when it comes to assessment.
I want to push for another assessment but unsure if camhs went about it the right way last time and part of me wonders if I should try private. I'm desperate for his to get the help.
Hmm it's very hard to say.
I do think it's crucial that the assessment team get information from your son's school as part of the assessment. But then again I do know a few parents that got a diagnosis without information from the school. So I'm assuming they can.
Why do you think it's ASD?
I believe you can ask for referral to one of the specialist assessment services like at GOSH or the Maudsley.
My ds was diagnosed without any info from school (as they failed to respond to the paed).
It's a lot of little things that added up describe asd especially apsergers syndrome. It isn't only me that has seen it professionals have too but when it comes assessment they have said no. This could turn into an essay so please bare with me.
When he was first born he was a quiet baby to the point he only made little whimper noises if he was hungry or needed a nappy change never an all out cry. He babbles and made a few noises from around 4 months. When he was 6 months he seemed to change over night. It was literally I put him down as the baby I described and I woke up to a screaming baby who just couldn't be comforted. He would only settle on me or my dm no one else could go near him or her would make a loud scream and wouldn't stop until 1 of us took him. He would only wear a vest and nappy any other clothes had his screaming. I kept taking him to the doctors and they said there was nothing wrong and it was a phase, same with the hv. After 6 weeks he seemed to calm down and I was slowly able to introduce baby clothes back but he had stopped with the babbling and never seemed to make eye contact. The only time he made any noise until he was 11 months old was his scream. He was behind all his milestones and when I questioned it I was told it was because his older db was a toddler and second born kids tend to be slower. He always had food issues and was hard to introduce new foods to as he got older food couldn't touch and things like fish fingers or anything with a flat surface he would stack.
At 2 we had him walking and saying words like mama dada and the like I was blamed and told I didn't do enough with him. I have been on so many parenting courses as by this point he had such rages over what seemed to be nothing. People being near him would set him off baby groups were an absolute nightmare as he would sit and scream at people walking past. He had a major obsession wih Thomas the tank to point he would not eat or drink unless using a plate cup and cutlery with Thomas on. He would only sleep with a Thomas pillow but when he did sleep it wouldn't be for long he could sleep for half an hour then be up for 24.
At 2 and a half the hv decided to apply for 2yr old funding as they felt it would help him but it just made things worse. I got constant calls to pick him up as he had screamed and kicked off because a child had gone near him to point he would throw things scream and take his clothes off and run and hide in a corner. I'd get there and be able to calm and dress him and then take him home. He only toilet trained just after his 4th birthday until then all attempts would end up with him wetting and soiling himself that much he would be sore.
We moved when his ds1 was a few months old and he was put in a new nursery he had been there 1 session and he had figured out the code for the button door lock (buttons were a big obsession at this point) and let all the children out to play.
He became obsessed with toilets and of you went into any with cubicals he would not leave until he had flushed every single 1 in order of starting 1 side of the room to the the other.
His rages always ended up with me having to physically restrain him or her would hurt himself or someone else. He used to n pick his nails until you couldn't see a white tip but when the rages started he would dig his fingers in his leg and even when he wore jeans he would end up with fingernail marks in his legs and at times he would make himself bleed. I have lost teeth from his head hitting back onto me in a rage. His eyes glaze over and he never remembers what has happened afterwards this still happens now.
He is verbal now bit still struggles with fluency and has a speech impediment but slt has had to stop as he is struggling with impulsives and focusing at the minute and these make him stressed so the impediment gets worse. It's a viscous circle so they are waiting until he is more stable.
It's only been in the past 2 years he has been able to gain any social skills at all as well as eye contact. I have worked with school to try and teach him how to involve others in play but even now it's a struggle and it comes across more like mimicked behaviour he has got into a habit of doing if that makes sence. He can show sympathy to a person but no empathy at all. He responds to someone being upset like I do with her and his siblings.
He is a very intelligent boy he can take things apart and build them back with no instructions and he is brilliant at maths and science but his writing is more like that of his 5 year old brother.
He has always struggles with his gross motor skills and still has problems kicking balls and was only able to catch a ball at the age of 7.
He has 5 other siblings and none of the others present like him. He spends most of his school day in tlc a group for children with sen and behaviour problems. There is another boy a year younger who has asd and they are very similar but there's obvious differences if that makes sense.
There is probably a lot I've missed off and I'm sorry for the rambled mess I find trying to describe everything hard at times.
Sorry but my DD with a tiny fraction of the behaviour you describe has a dx.
What I did to make sure she got the diagnosis, was make sure I could give them examples of all the behaviours they were looking for. I am also surprised they didn't contact the school - as "exhibiting behaviours in two settings" is often used as an excuse not to diagnose. I would also wonder both how much experience the CAHMS team have and how many girls they diagnose. Because almost every girl I know can fake some eye contact, some empathy etc.
Have you contacted the NAS helplines?
I have and I was told to email the education rights department which I have done and I am waiting for a reply.
The last person who did the assessment I was told had years of experience the whole thing lasted 30 minutes.
I know it sounds precious and stupid but I know in my heart and gut he has it. The last education psych sat down with me and his words was ds2 was too complex to just have adhd global development delay and sensory processing disorder. He said he wasn't allowed to dx him but if he could he would bet his career on ds2 having asd especially apsergers syndrome. We have had teachers from a special school in to try and help with strategies to help him cope. They said I should push for a second assessment as they had children within their school who had dxs and it wasn't as obvious with them.
It's getting harder to cope with the constant fighting and pushing to try and get him the support he needs. Camhs told me that the help with the problems I was telling them about he could only get with a asd dx. But when I finally get him the assessment they say no he doesn't fit the criteria. If I have to go private then I will of it means he gets the support he needs as that's what all the fighting is about. We were asking for a placement in a specialised setting from the age of 3 and it took us until the beginning of this month for the Lea to agree it's what he needs. I'm not actually sure I have any faith or trust left in camhs anymore it feels like they keep pushing us to 1 side and rail roading us when they say they will have result for things like the asd assessments as well as those for adhd and sensory processing disorder it took me ringing everyday for 6 weeks after the appointment in which we was told we would have the results to actually get them and then instead of it being in an appointment and talking to us we just received a letter stating the finding and no offer of an appointment. I had to chase it up. I'm also not keen on the way they just pass a prescription over saying this should work I was clear from the adhd dx that I didn't want him to just be on medication but I felt it was in his best interest in camhs and me working to teach him to control it too. That was agreed and never materialised it was same with the melatonin it's took until the start of this month after me asking for help with his sleeping from the age of 7 to get them to do anything.
Sorry for another rambling essay I'm upset and frustrated more then usual as he's had 2 meltdowns and I couldn't take him to school until later this morning. He's finding it harder to cope with how he feels and he doesn't understand why he is so different from most of his peers.
Have you ever popped into the "Goose and Carrot" threads? They are a great place for support and to rant.
My area CAMHS have been good for my family - but I know that isn't everyone's experience (and I'm glad I choose that route when I had a choice as I discovered the paediatrician I would have seen is someone I know personally).
Have you contacted someone like SEN!SOS! - they are a charity that help fight SEN cases. If you do call you may have to repeat phone, as they can be very busy.
I haven't but I will have a look thank you
I've tried camhs in 2 areas in the north west but haven't had a good experience with either tbh we seem to be stuck in never ending circles but I will look at send! Sos thank you. I've not really looked into many agencies for help though sendis was really helpful earlier this year always felt like a fraud when things have been mentioned as I tell myself everyday there are those wih worse problems that need help more. But after this morning I don't know what else I can do to help him anymore.
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