Being sent to Autistic Unit without a diagnosis or formal appraisal?

(27 Posts)
prettybird Mon 21-Feb-11 15:03:59

Not sure where the best place for this is - I've posted in Special Needs - Education and will maybe post in Chat as well because it is urgent. Sorry it is a bit long.

A friend of mind has just (today) been informed by letter from the council's education dept that her ds (8) has a place at the local Autistic Unit starting in August - not something she had been pushing for.

He is in P4 (=Y3) and she has been asking unsuccessfully for an assessment since he was in P1. She's finally managed to speak to the head mistress of his current school who said that her ds met all the criteria of a child with Asperger's and that he would be better off at the unit and that he didn't need to have a diagnosis to attend.

She has an emergency meeting at the school tomorrow morning with the head and the education psychologist to discuss. She has had dealings with the education psychologist but there has been no formal appraisal or referral to other services/support - in fact I was talking to her yesterday about her frustration about the lack of an appraisal and offered to help her write a letter demanding asking for the appraisal.

She is not sure how she feels: devastated, upset, maybe in denial (direct quote from the email from her) She is trying to write down questions and can't think of any just now - so I thought I'd ask the wisdom of Mumsnet (with her permission).

Her son is challenging - but is also very bright. He is youngest in his year - which had been her dilemma when sending him to school as he was ready educationally but not socially (in Scotland we do have the option of genuinely keeping them back a year, so that a child ends up one of the oldest in the year rather than the youngest).

He is capable of major meltdowns - but also understands discipline. He relates fine with adults. I know her (and her son) through Minis Rugby, where the coaches can cope with him - ensuring that he had clear boundaries and when he transgressed them he had a "time out" (no different to the other kids, although he possibly had more timeouts than most).

He was kept in the P1-P3 group for a couple of extra months (as his coaches had a good relationship with him), but he is now training with the rest of the P4s. His P1-P3 coach says some days he could be fine - really good, helpful, charming, but other days he could be awful - although he only once over the 2 years had to send for his mum. He can understand, however, how a school might find it unacceptable to have a child that needs that much attention (fine on a rugby pitch when you can send them to the side).

He has been excluded from the school 3 times over 4 years - always with the support of his mum. However, she has not been happy to find out that recently he has been the subject of bullying (coming home in "spare" school trousers because he had pushed into the mud) and not been told about it (she only found out when she washed the trousers and noticed that they were girl's trousers).

Should she allow this to go ahead without a formal statement? What sort of questions should she be asking? Having looked at the HMI (Ofsted) report for the Unit and the School Handobook, a lot of the emphasis of the Unit is on "learning core social skills" (and not so much on "mainstream" schooling one of the HMI's criticisms). It also has shorter school hours and different playtimes to those of the mainstream school it is attached to (again, a criticism by HMI - so that may have changed).

How will that impact on her ds' long term education? What should her next steps be?

Turniphead1 Wed 02-Oct-13 22:55:33

Taramoonstone - I hadn't seen this thread before but as a mum with a recently dx DS with Aspergers I am so glad you have come back to update us.

I am glad your boy is doing well and wish you lots if success with his transition to High School.

lougle Wed 02-Oct-13 21:38:56

How wonderful smile

allyfe Wed 02-Oct-13 14:06:45

Hadn't seen this thread before, but taramoonstone I'm so happy for you. It is such a great statement of why things like mumsnet are an amazing support and source of information. Glad things are going well for your DS.

taramoonstone Wed 02-Oct-13 13:55:57

Hello everyone, since the last time I was on, DS has since been diagnosed with aspergers, he is still settled in school, still has the odd meltdown and lashing out at people who get in his way. Just getting him ready for starting high school in August 2014. Thanks for the help and advice over the years

EllenJaneisnotmyname Tue 22-May-12 21:05:23

Tara, didn't see this last year, but I'm so pleased things are going well for your DS. ((((hugs)))) for you for your loss. sad I hope this wasn't your very supportive dad.

My DS (12) has ASD, and as you probably already know, it's not the end of the world and a DX doesn't change your boy. The way you were kept informed by the EP certainly wasn't very good, but I hope your DS goes from strength to strength.

taramoonstone Tue 22-May-12 20:26:16

good evening i thought iwould give yourselves and update on what has been happening with DS, he settled quite quickly into the new school, there was a clear improvement in him, i am not stressed with the school and they have been so supportive over the last year, as alot happened in a short time of DS starting ie his grandpa died. on other good news is DS is finally reached the top of hte waiting list and is getting assesed for ASD on the 11th june. thankyou all again for the support and wise words given.

Lougle Tue 08-Mar-11 19:29:41

Oh well done you, taramoonstone!!! You have been so sensible. Never look a gifthorse in the mouth!

The way I look at it also, is that there are many more standard schools than Specialist schools, and it is MUCH easier to get into a 'normal' school, because the requirement is that you are a school-aged child grin

taramoonstone Tue 08-Mar-11 16:08:04

good afternoon just an update for you, there was a meeting today with the autism unit where all the parents of children starting in the august meet.

on arriving at the school the staff where nice and helpful. there are 24 children within the unit which is in the main building.
the children aren't segregated and mix with mainstream at playtimes, lunch times and also in some of the classes, we saw one child going to do maths with the other p7.
they have all the class rooms set up the same way and have alot of visual aids so the children know what is happening and when it is going to happen. they do now focus on the cirriculum but if the child is having a bad day they don't make them do the work as that child will not learn but do other things to help them understand why they are feeling like that and what they can do to help them in the future.
at one point the unit coordinator was saying that they work with speach and language therepists, which i ask why do you have them, she then asked did i have a diagnosis which i answered no. to her surprise, she didn't understand why ds was then given a place without a diagnosis.
so i think she will be going and speaking to ed pysc. see what happens. so after seeing and speaking to the unit co ordinator, i am still positive and will be quite happy to allow ds the oppertunity to attend the unit and see if it helps him in his future, i can almost garuntee(sp)that if i kept him at his current school next year i would be getting phone calls saying come and get your child every other day.

prettybird Fri 25-Feb-11 20:47:22

taramoonstone : a few more comments over here (Hadn't sent you link to that thread initially)

taramoonstone Fri 25-Feb-11 20:31:52

i know of families where i stay, whose child has had a diagnosis and still not be given a placement. we are meeting with the new head teacher in a weeks time to have a look around, ds is not going to be the only new kid when time comes there are 2 other so at least i can speak to the parents and know that what i am feeling in normal.

Lougle Thu 24-Feb-11 11:14:56

taramoonstone, well done! The thing I always fall back on is 'what will I regret later?' I would regret not allowing my child the chance to thrive in a specialist environment much more than trying the specialist environment and seeing that it wasn't right for her.

My experience in England is that parents fight tooth and nail for the place you have been offered.

IndigoBell Wed 23-Feb-11 09:04:53

Brilliant news! Very pleased for you.

taramoonstone Tue 22-Feb-11 21:16:21

good evening everyone,some of your stories and what you have gone through makes me realise what could be a positive experience for ds. this morning i woke up with a positive mind, went into the meeting positive and was very cool calm and collected, had my questions ready and the support of my father, Ed Psyc arrived on time for a change, at the meeting in January which was city wide for placing request, the wee fella's problems were discussed and what the school had done to help ds with his difficulties, it was then decided that a place at the autisim unit would an advantage as there would be smaller class sizes 8:2 compared to 25:1. they would be able to give him the supported and coping stratagies, also his place would be asseses each year to see if he still requires the help, this actually help put my worries a rest, to know that he could go back into mainstream schooling, the head teacher also said he would be welcomed back, so armed with this information, i will be making a couple of appointments to view the school myself and then arrange for ds to look around and do settling days.

Nickmom Tue 22-Feb-11 16:46:52

Hi TMS......I'd like to give you another story.

My DS didn't speak till past his third birthday. He was VERY active and could be disruptive. Big tantrums. Not sporty at all but I could sense he was bright. I sent him to a special needs nursery. He was with deaf children and ASD children. He got wonderful care and developed in every way. When it came time for primary I decided to try a mainstream school. The head of the nursery and the excellent head teacher both told me he was not ready and that I was making the "biggest mistake of my life." I followed my heart and did it anyway. (sleepless nights to say the least!!)

The first year was hard. He was in a bigger environment and was a bit immature socially. He struggled with handwriting and transitions and the (horrible) teacher sometimes had trouble controlling him. She suggested ADD and I had him tested but the Ed psych replied that the teacher might need to be medicated but my son did not. I sought help for SENSORY INTEGRATION issues and this made a big difference. (Great book called the Out of Sync Child.) I continued to read and learn as much as I could to keep on top of his progress. Slowly, it all fell into place.

Now......fast forward eight years. He is near the top of his class at a VERY academic school. He has friends and is very well adjusted. He can still be a bit immature but is "cool" enough to keep that at home. I once told a teacher about his start and she laughed and said I must have switched children. He is articulate and personable. He has even started to show some athletic potential. He is happy and a joy to be around.

Follow your heart. Get the help you need and educate yourself. YOU know your child. Trust your instincts whether they tell you this is right or wrong. I am sure you know best.

GOOD LUCK!!!!

asdx2 Mon 21-Feb-11 20:58:38

My ds attends an autism unit attached to a mainstream school. I threatened tribunal to ensure he got a place tbh had it cost me a fortune it would have been worth every penny, Ds receives specialist support to manage the autism so that he can do the academics.
Your ds is very fortunate to have the opportunity of support to meet his needs without you having to battle.
I would say if this place has been offered then either the current school have somewhere along the line said they cannot meet his needs or the professionals involved don't believe the current school is meeting his needs.
It wouldn't be offered if the cheapest option (mainstream without support) was enough believe me.
It may be that ds only needs to attend the unit for a while so they can give him the skills he needs to be successful in mainstream or it could be that he stays at the unit and transfers to another unit for secondary school (a whole new kettle of fish) but it has been offered because it is needed now and without dx or statement then it is desperately needed would be my guess.
Have a look with an open mind you might be really surprised but please don't turn it down out of hand for your ds's sake.

RoadArt Mon 21-Feb-11 20:45:20

Lougle - this is so heartwarming.

So many people are negative about special schools but your experience demonstrates on how good they are for the individual needs of the children, about making them feel important but at the same time encourage independence. The staff are trained to help the uniqueness of the children and develop them to the best that is possible and they are definitely given opportunities to take part in many different activites where they would be excluded in mainstream.

To the OP, the fact that the school is offering this opportunity should be accepted, they are trying to offer a solution that meets the needs of the child. If it doesnt work then at least it has been tried, rather than just talked about.

Lougle Mon 21-Feb-11 20:35:50

taramoonstone welcome to MN smile

I'd like to share my DD1's story briefly, as we were not aware that she had SEN of any significance until she started pre-school. Until then, we had noticed things, but they were dismissed. We had no benchmark.

When DD1 started Pre-school at the end of the Summer term, nothing was said, other than that her gait was a bit 'immature'. Well, yes, she had only started walking 7 months earlier, at 23 months. No wonder.

Shortly after the Autumn term resumed, the pre-school supervisor and the SENCO asked me to give permission to get DD1 observed. They thought she needed more attention than they could give, and she was a bit behind.

I won't bore you with the details, but DD1 has SEN. She has a brain malformation which was only diagnosed at 3.5 years old, and is globally affected.

This is why I want to share her story with you:

When DD1 was observed by the area SENCO, she was given 1:1. But that 1:1 could only do her best in the environment they were in, and DD1 didn't progress much. Everyone knew that she was the girl with SEN. Those that didn't, thought they knew that she was the out of control girl who was naughty with no boundaries.

When the LA assessed DD1 for a Statement of SEN (we have to have one of those to get any decent help - it takes 6 months), they suggested Special school.

Now, she could have gone to Mainstream with 1:1, and she would have needed it from the minute she stepped on the school grounds to the minute I collected her.

But, she goes to a special school now. She is celebrated, she is loved, she is given opportunities far beyond those at mainstream, and she is allowed to maximise her skills.

She even takes the register back to the office independently, something which would be impossible in mainstream (she would escape).

Can I suggest a few points to consider, as you look around?

Where will your DS 'fit' best? Will he be loved, celebrated at his current school, or will be 'managed' and 'contained'?

Where will your DS be given the best life skills? Will he be prepared for life in his current school, or the ASD unit?

Will he be safe at his current school?

Which school wants your DS?

I thank God daily that DD1 is at the special school. It was a scary choice to make, but she is seen as the most special, wonderful child, and we rarely hear about her more challenging behaviours, because they are just seen as obstacles to overcome.

mrz Mon 21-Feb-11 19:30:10

I don't think you should dismiss the unit as an option as they can be excellent but having said that you know your child and his present school ...we don't.

good luck

taramoonstone Mon 21-Feb-11 19:27:08

hi i am this wee boys mum, thankyou for all your input, a referal letter was sent to the local autism assesment centre in May 10, we are still waiting on an appointment.i would rather he stayed in the school he attends just now,he is settled and is in a routine, they have a couple of pupil support teachers which go round all the classes, i believed that if he got a formal diagnosis that the school would get funding for 1:1 help, i have a meeting tomorrow and my dad is coming to it, he has been to all the meetings since P1, so he is my head of reason. when it comes down to it, all i want is the best for my son,

Lougle Mon 21-Feb-11 18:16:56

Scotland is a whole different ball game to England.

My DD1 attends Special School in England, and had to have a statement of SEN before she could even get in to the school.

When we thought we may move to Scotland, the Ed Psych I phoned simply said 'let me know when she's coming and I'll sort it'.

In Scotland there is no need for a document to say that the child needs specialist resourcing. It is the opinion of the Ed Psych.

Let her go and see...you might be amazed.

prettybird Mon 21-Feb-11 18:13:56

ironic blush

prettybird Mon 21-Feb-11 18:13:22

It does seem a bit iroic - people on here having to move heaven and earth to get statements and then the addtional resource and in contrast, my friend gets told that her ds is going to this specialist unit without any consultation....

It is however sadly typical of the Education Dept, which is a bit of a law unto its own and crap at communicating, thinking it knows better than parents

mrz Mon 21-Feb-11 17:58:19

God the parents of my two ASD kids can't get a place for their children in units for love or money ...

prettybird Mon 21-Feb-11 17:12:22

I've recommended to her that she goes and visits the unit.

Looking at the school handobook for the mainsitream unit, the Autism Unit is run in separate classrooms to the "mainstream" school, although the P7 mainstream kids do "help out" in the separate playground on a rota basis to help with social skills.

She (understandably) doesn't want to go to vist with Educational Psycholgist (as suggested by the head teacher) but is going to go with a friend who know her boy - and is experienced in childcare. She's lost confidence with Ed Psych becaseu she hasn't kept her informed about what was happening (there was apparantly a muilt-disciplinary meeting about her ds last October which she has only just been told about), hasn't sorted out a formal diagnosis and when they have meetings about her ds, continually refers to her own expereince with her daugher - to the extent that my friend has had to say "we're not here to talk about your dd, we're here about my ds".

She isn't bothered per se about a diagnosis of Asperger's. On the other hand, if it is "just" behavioural problems due to her splitting up from his dad, moving house twice within a short period, and being the youngest in his class - then that also needs to be addressed.

His swimming teacher hasn't been told that he is potentially asperger's and she doesn't have any problems with him. She is apparently quite strict though - and says he does have difficulty concentrating sometimes.

LetsEscape Mon 21-Feb-11 16:45:40

I agree with Indigobell, she is actually lucky and it may be the making of him. No placement is permanent regular reviews will take place and if at any point parents or school feel he is incorrectly placed he can be moved back into the mainstream. If it is a unit or specially resourced provision he may not be in th special class much but supported in the mainstream class by specialist staff. This could be a wonderful opportunity for him as clearly things are not working for him now. My only other thought is whether this is an assessment placement.
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