Autism v. Other SN

[donkeyderby]

I am finding that locally, services for ASD children are expanding and improving. Can I stress right from the beginning that I do not begrudge this - the more help parents receive, the better and there are an awful lot of ASD kids being diagnosed out there who need specialist help. I also know that the services are not perfect and parents of ASD kids still suffer. I'm not trying to start a fight!!

However, there has not been an expansion in services for children with disabilities that do not fall into the ASD category, but still present similar management problems, notably behavioural issues.

Examples include: An ASD parent's group with lectures, email forum and regular meetings set up by Education: A monthly film showing at a local cinema that used to be for chldren with special needs and has morphed into one for ASD kids only: A siblings group run by the Carers Society that is now only for siblings of ASD kids. A reluctance to use PECS in local SLD school unless child is on the spectrum, despite proved efficacy of PECS for certain non-ASD kids. Pre-school Up to 30 hours per week per child ABA therapy funded by LA (though I think that's being withdrawn).

There is no local training available for managing challenging behaviour in SLD kids without ASD - something I know many are in need of. There are so many children with very autistic behaviours who do not exactly fit the profile of ASD, but whose parents struggle with many of the same issues and get no help.

For nearly a decade, I have repeatedly approached the local (LA funded) parents group to design some training around SLD and challenging behaviour but to no avail.

Any ideas how I can push our non-ASD kids up the agenda?

It does seem very short-sighted to base support/services round DX rather than round children/carer needs. I would have thought firstly take up with the individual organisations as to exactly what the restrictions are on access - see if you can twist the arm of cinema and carers society to loosen up with who uses the groups/services. I n particular I would have thought the cinema should be happy to broaden access. My other thought is whether an organisation such as Mencap that deals more generally with LDs may be able to assist at all.

I would be very surprised btw if the LA funded more than the kids of the most forceful parents for 30 hours a week ABA.

TotalChaos, thanks for your ideas. ABA - Some were getting 30 hours ABA but I don't suppose it was many and it is now being withdrawn. Presumably they looked at their budget and nearly fainted!

I am going to approach the local parent group re the cinema because they co-ordinate it, but because of my long, low level campaign re. training, they seem to label me as a moaner and I have to tread carefully. They are not very focused on SLD. However, I do plan just to attend the next film with my DS and encourage others to do so. I know they won't try and stop me but it would be nice for others to know about it and be welcome.

Mencap locally is quite toothless - more adult-based, mini-bus holidays to sad, swirly-carpeted hotels on the South Coast and bingo nights. They are not a campaign group, but I may try them out.

Gawd where are you-

Can I compare with here? Just to show you that its not genralised:

No ed psych in the County. They can't get any to apply. No Ed PSych = no DX for asd.
or statement. LEA paying for 4 kids per school to see ed psych a year privately, has to be new referral so a kid like ds1 albeit needing urgent help can't get seen.
Possibly ever.

No after school clubs or [provision for anyone except VI kids, and that's paid for by a charity.

Parents group for asd yes but all funded by NAS.

No asd school provision post 11. gawd knows what will ahppen to ds1 and ds43 as it's unlikely either will be MS-able at that stage absed on current abilities. Mind, there's not going to be pst 11 provision in any SN facility: they are not taking any new kids in the existing facillities and are looking at closure.

So it looks like we'll be forced to move when ds1 reaches 11, hich seems rather unfair- especially on NT ds2.

AS kids cannot get any SS support because of a bizarre qualification rule they have imposed: all AS means is no language issues so a child like ds1 who is AS cannot get help despite severe aggression whereas ds=3 ASD has no such issues and does qualify. Crap huh?

Don't get me wrong- I don't know where you are and I think YANBU if that's the set up in your area. I just wanted you tor eaise that its not the same everywhere. In some ways that could be a bonus for you as you can find out what's available elsewhere and Aargue for it?

I suppose as wel as asd dx's rise there will be more available as more parents have a louder accumaltive voice, and also often arrange stuff whihc are funded by cahrities etc but people think are state funded if that makes sense?

generally, ime, its all crap.

ds43 arf

ds3

set up a parent's action group as a local lobby group. get yourself a few parents together, form a committee and decide what you are going to do. your local council will be grateful, and will throw money at you (providing you fill in the forms lol) to set up and run as many activities/ support groups/ sessions as you like. big lottery, sport for all, etc etc. the difficulty is that no-one official wants to organise anything any more, they want the voluntary sector to do it, so nothing gets done unless you do it yourself.
it honestly sounds like your best bet - instead of getting a reputation as a low-level moaner, get a reputation as running one of the most respected voluntary action groups in the area, and changing the local provision for children of all disabilities.

be warned though - once you start, no-one will let you stop lol.

Oh yes I know electra but the PAeds here refuse to dx without a report from Ed Psych (luckily my ds's got their dx before the last one left)

As I stated right from the off electra, I know services for kids with ASD are far from perfect and I totally understand that you have your own struggles. My concern however, is the lack of local services for non-ASD, in particular SLD kids with behavioural and communication issues which I can assure you is fact.

Are we in the same LEA electra...? I am talking about a period of over ten years in which ASD services have expanded. Those with younger ASD kids would not necessarily know that in this period, ASD services have been created that did not previously exist. I have listed those services previously.

I explained about the ABA here and that it is being - or has been - withdrawn. When it existed, some were getting up to 30 hours a week paid for by the LA. The therapists, having been trained up, are still available to parents if they can secure DP's to pay for it. I have no idea how difficult it was to secure ABA elsewhere, but here, SLD kids with behavioural issues got, and still get, no specialist help with behavioural issues whatsoever. This is not satisfactory.

The SEN code of practice probably doesn't cover voluntary organisation projects like the cinema and sibs groups, or offshoots of LEA like the support/training group set up for ASD. I think these things may fall outside any law and are about individuals with ideas. I've tried to be that individual but I don't find that a) I've got the energy to do it alone and b) the people who matter aren't listening because nothing ever happens. I explained about the impact of my DS's behaviour to the head of the parent's organisation and she said, 'why don't you put him into care'....! This attitude is what I'm up against.

I think that maybe what is significant about ASD is that it is such a large group and therefore has more of a collective voice nationally, (even if it doesn't feel that way!). Also, locally, there has been a highly respected teacher who heads ASD services and I think she has been responsible for service development and awareness-raising and she's done a good job.

My issue is not telling parents that ASD kids are having it easy, but trying to get a collective voice and raise awareness for kids with a variety of diagnoses and none, who nevertheless, present with similar issues.

In airness dd I think we do all agree its unfair- perhaps your thread was slightly aggressively titled though? there should be no V. Just 'lack in facilitties / provison for NON -asd kids'

Although 'Even more of a lack in provision for non asd kids' would priobably be more accurate.

Its shite for you, the whole system is shite.

Sorry about that. Just trying to keep the title short - but obviously not sweet! Think I'm going to bow out now as I didn't mean to cause offence to ASD parents from other LA's who are not receiving the services we have locally.

Honestly DD don't bow ut- not offended just making a quiet by the by comment

It's bloosy ahrd to see others get help when ur kids dn't. That's the same if they're ASD, NT, whatever.

Of course YANBU t be a bit pissed off.

DD has made a very valid point that services for disabled children are very poor, particularly for those without a diagnosis at an early age. There are pockets of better services (ie in DDs area asd). In our area there are some early intervention services which benefit those with disabilities that show up early or move from areas where they have better/ faster diagnosis!! In our area there is little to help with the difficulties of raising a child with moderate or severe LD. Its as if we do not exist. My son could not get nhs SALT until he could make 3 word sentences - he was at school by then with behaviour deteriorating by the day and only a label of delay (OT took till age 6). There are voluntary organisations and supportgroups for specific conditions (like DS and ADHD) and mencap can be very helpful but vertually nothing funded.
Why is there so little? Now he also has a dx of autism ( he was 8) we are getting continence help (though not nappies yet) and Camhs appointment but why were his very obvious needs outside the system for so long and what would have happened if I had gone under and not fought for these things? Excuse rant - still get angry on ds behalf!!

Ta Clarissimo. Had to get on with some work as was getting embroiled in Mumsnet and feeling like thread had gone off in the direction I had really hadn't wanted it to right from the start but feared it might! You're right, it's just hard to be in need of services that don't exist for whatever reason. Shite is the correct term for it.

electra, I feel totally differently to you re my priorities. Maybe it's because DS is at an SLD school and - bar the issues in my SALT thread - I have had virtually no battles with the school. He is well provided for there and happy and I know how lucky we are. My issues are around play and leisure outside of school, managing his behaviour at home and parent support and education, most of which falls outside the remit of the LEA. My point about the ABA and PECS is to give an example of a service that exists only for ASD kids with no equivalent support for non-ASD kids.

I can't speak for any other area in the country apart from my own. Perhaps some mums with non-ASD kids have experience of professional support with challenging behaviour? I'd love to hear of some positive initiatives and then I can use them as examples for the powers that be.

Ta Clarissimo. Had to get on with some work as was getting embroiled in Mumsnet and feeling like thread had gone off in the direction I had really hadn't wanted it to right from the start but feared it might! You're right, it's just hard to be in need of services that don't exist for whatever reason. Shite is the correct term for it.

electra, I feel totally differently to you re my priorities. Maybe it's because DS is at an SLD school and - bar the issues in my SALT thread - I have had virtually no battles with the school. He is well provided for there and happy and I know how lucky we are. My issues are around play and leisure outside of school, managing his behaviour at home and parent support and education, most of which falls outside the remit of the LEA. My point about the ABA and PECS is to give an example of services that exists only for ASD kids with no equivalent support for non-ASD kids.

I can't speak for any other area in the country apart from my own and please please please don't think I am saying ASD's get it easy. I just can't keep repeating this.

Perhaps some mums with non-ASD kids have experience of professional support and training re. challenging behaviour? I'd love to hear of some positive initiatives and then I can use them as examples for the powers that be.

electra, thanks for the thread. Read through it, (it made me cry when she finally got help - I recognise the violent, shit-smearing, headbanging horror of it all). I am in contact with the Challenging Behaviour Foundation. Yes, we get help from SS after some long battles, which keeps us from disintegrating as a family.

What I've always wanted is to meet more parents in a similar boat and for my DS to be able to socialise with others. The ASD support group locally meets frequently, and offers that enviable mix of mutual support and professional advice on the issues parents feel are most pressing. There used to be a general SEN support group which folded many years ago. The school is not good at reaching out to parents, despite being urged by other parents to do so. When it existed for all SEN, the cinema was something to do on a rainy day and offered a safe space for us to be free from the tuts and disapproval of the norms and meet others. I have so gone off inclusion in the last couple of years - some people will never 'get' disability!! I hope other parents can understand my disappointment at the exclusivity of these ASD services when no alternative for us is on offer.

I am actively involved in an wonderful, chaotic, parent-run group for parents and kids with SEN, but my DS is approaching his teens and he will be too old to be a member soon. I would really like someone to meet people to move onto the next step with me....or for a professional to do it for me frankly! I feel knackered by the last ten years and can't do it alone.

where are you dd? our action group organises drumming, drama, dance, arts, for 9-16s and family festivals, SN audience only pantomime at the local theatre, circus skills events etc etc.
like i said, sometimes you have to do it yourself... we are a pan-disability organisation and have contacts with NAS, other local specific disability organisations and all the local special schools. we use the local volunteer bureau to find volunteers to give 1-1 help (or 2-1 if nec) alongside professional tutors and we CRB and provide training opportunities... we have helped set up a youth club for our local SN teens which is about to open, and provide access advice to many local organisations. we have just joined a local accessible gardening project... last year we registered as a charity.
if you are anywhere near north hants, do let me know.... we are always looking for committee members lol...

madwoman, your group sounds fantastic. Not too far from North Hants, but far enough not to become a committee member! I'm all committeed up as I'm currently involved in a couple of committees.

How do you get your funding? In our group, we don't intend to recruit helpers in any great numbers as it is for parents to attend all events with their kids, so we do not have huge expenses. Would love to work more closely with other agencies though to get the help families need. It would be great to have more clout to encourage others to widen events to include (all) SEN kids. Are you able to give the name of your organisation? Would love to have an ideas swap!

One of my issues is that the local SEN group is almost totally parent-focused, so do not organise anything for children (apart for some odd reason the cinema club). I always think that if the kids are kept busy and entertained, it follows that the parents will have a better life.