New here- advice please on ASD! Sorry, long

[RockinSockBunnies]

I've lurked in this section from time to time, but not yet found any answers so am really hoping that someone can offer some advice.

Some background: I've gained a step-son (for want of a better word, since his father is my DP, though we're not yet married) this last year. I have a DD, nine. We're all living together now. DP has joint custody (50/50) of his son. So, one week we have him, the next he's with his mother.

Now, DP's son is almost eight and has a lot of problems, but no diagnosis yet. It seems very likely that he's somewhere on the autistic spectrum, but this is not yet formally diagnosed.

He's currently in Yr 3 at a mainstream primary school. His school are pushing for a statement, since he can be very difficult in class. He talks over others, insists that his own opinion is correct, hides under the desk, stims, makes odd noises/shrieks from time to time, cannot engage with other children (who are beginning to bully him), soils himself fairly regularly and has problems concentrating on a subject if it's not something he's interested in. He is incredibly good at science - fascinated by space, electricity, atoms etc. His vocabulary is astounding, yet he never alters his pitch or tone of voice or adapts conversation to the listener.

Having read quite a lot about the subject, it seems that the triad of impairments is necessary for an ASD diagnosis? Is this right? DSS however is aware that others do not know what he knows. He tells us about what he did at school, tells us to come and look at things he's found in the garden etc. He doesn't assume that we know what he knows, which seems to go against one of the key 'impairments' for autism.

I find his behaviour extremely difficult to deal with. He hates new places, crowds, cafes, mealtimes etc. He'll repeat meaningless phrases at full volume over and over if in a situation he's not happy with. He'll throw the sugar over the table in a cafe. He has no sense that his behaviour is 'wrong' within the context of a social situation. In terms of discipline, he doesn't really respond as my DD would, if for example, you tell him off. He simply is curious as to the change in tone.

At present, he is being assessed by Family Services I think. His father is quite relaxed about any possible diagnosis and is not pushing for a statement. The school is wanting a statement, but apparently have said that it's unlikely he'll get one as he's meeting the Key Stage targets. Can anyone comment as to the vailidity of that statement? Surely he needs support for social situations, to help him concentrate, to get him dressed and undressed for PE etc?

Obviously he's not my son, so my input is limited. But, my approach would be to be pushy, to get private consultations, to get a formal diagnosis ASAP, to begin some kind of intervention on an intensive basis. To get multiple opinions on the matter and go from there, rather than relying on the local authority to do something. I also think that a special school would be more appropriate for him, helping him to get the social skills he needs, as well as supporting him academically. DP believes that DSS can 'learn' social behaviours by listening to social stories. I'm very skeptical.

I suppose I'm venting a bit. But does anyone who's been through anything similar have any points to make? Can a child without all three impairments be diagnosed with ASD? What else could be causing DSS's problems? Are they something that can be overcome? Would exploring private healthcare and consultations etc be worthwhile?

Please help......

If your description is accurate I'd say he has a good chance of a diagnosis depending on the professionals involved of course.

If the school cannot successfully of him the support he needs to access the full curriculum on school action plus he is entitled to a statutory assessment. He does not have to be failing academically. My DD has just got a statement and she's working 3 years above her chronological age.

A special school may be more appropriate for him but he may do a lot better in mainstream with adequate support or perhaps could be placed in a mainstream autism base if there are any close by.

Children with ASD do not all display the same symptoms - my DD makes good eye contact but still has a diagnosis of Asperger's. Social stories can be very successful but that depends on the child and the situation you're trying to explain. They don't make a child with ASD NT by any means.

I would try to ensure that his parents understand how much harder life could be as he grows older and moves to a larger school with more unfamiliar faces, a busy environment and less tolerant peers. It makes a great deal of difference.

HTH

but the triad is communication/social interaction/imagination ... I'm not sure how this 'He doesn't assume that we know what he knows, which seems to go against one of the key 'impairments' for autism.' fits into that

I'd also say that it is an impairment in each of the three areas that diagnosticians are looking for - not the complete absence of ability in those areas, children are varyingly affected. My son for example has severe impairment of communication but only mild impairments of imagination/social interaction & as an ASD diagnosis. He loves to tell us what he's been up to!

The behaviour sounds like it could be ASD. Is the Family Services Assessment carried out by a multi disciplinary team? If there is input into the assessment by a range of professionals and from his school and parents, I expect they will be able to make an appropriate dx, even if he has atypical traits.

You say that you have only been together as a stepfamily for a year and that he spends alternate weeks with his father/mother. How does he manage with the transitions? Has his behaviour changed much for the worse since all of this took place?

Many professionals look at home life and parenting first before considering underlying medical issues, so it's likely that your home arrangements will come under scrutiny. Obviously it will be very difficult for any child to cope with gaining a stepmother/siblings and a change of home environment every week; for those with ASD it will be much more difficult. Behavioural issues with ASD are also similar to those caused by attachment problems so you might find that the professionals decide that this is the cause of his behaviour (rightly or wrongly).

It is good that the school are wanting a statement but often it needs pushing from the parents for it to really happen, especially if the child is cognitively able.

What is the mother's view on the child's problems? Is she likely to push for more things to happen or will she agree with your DP? You're right that your input will be very limited as you don't have parental responsibility.

Thank you for advice so far.

I've been reading and re-reading Charlotte Moore's George and Sam, which is why I'd thought that a lack of understanding that others don't know what you know, was fundamental to a diagnosis. I think one of the examples she used in the book was where an autistic child had appendicitis, yet failed to mention the pain since he couldn't know that others were not automatically aware of it.

In terms of strategy to ensure a comprehensive statement, diagnosis and intervention, what would the best approach be? To trust the local authority, or to take an all-guns-blazing approach, going private, getting a range of opinions and a firm diagnosis, then insisting that DSS is given what he needs.

I suppose I'd feel that if at least I could take DSS to specialists and begin some kind of regime, then at least I'd be doing something to tackle the problems, rather than taking a softly-softly approach.

Also, slightly as an aside, in terms of suitability for ABA, a psychiatrist (or psychologist) that had had contact with DSS and who I emailed questions to, insisted that ABA was only for severely autistic children (normally those with no language etc) and therefore not appropriate for DSS. Is this true?

Just wanted to chip in, I don't think that's true at all about ABA just being for severely austistic children

We're doing it for ds, who doesn't have a dx yet but is probably (?) at the middle/milder end of the spectrum. His language is ok, though slightly delayed. I think if you find out about ABA and think it's the right approach for your child the severity of asd is irrelevant - it's more about whether you think it's an approach that suits the child.

Hi Rock. Your concerns sound well founded, the NHS should be able to decide about a diagnosis (either camhs or a developmental paediatrician) so it's worth his mum or dp & you getting a referral from dss' GP.

Even if you cut out the waiting list by going private, most child psych / paediatricians prefer a GP letter. If you're London based I'd recommend the portland clinic neurodevelopmental service as they have full proper multidisciplinary teams on staff. Or the local NHS specialist (most moonlight privately once a fortnight or so) as their opinion will carry weight.

One way to avoid being fobbed off by camhs as a family with 'just' psychosocial problems would be to see if dp and his ex are able to jointly agree an approach. You've got quite a delicate part in this... you probably the most knowledge & you clearly care hugely about dss, but I'd imagine it's v hard to push dp & even more to influence his ex.

The week on / week off arrangement may not be perfect for dss if he has asd traits, ditto the recent changes in domestic arrangements. So rather than feeling worried about that I'd suggest being hopeful that eventually youll find a routine which works pretty well for everyone.

Yes you can use ABA for very high functioning children.

It can be used for behaviour, daily living skills, social skills. It basically breaks skills down into small parts and teaches them bit by bit and then builds back up. So ABA could be used to teach how to hold a conversation eg how close to stand to someone, how to look at them, what tone of voice to use, what topics are appropriate, how long to stay on that topic etc. I find it immensely useful for my DS whose IQ is normal.

Social stories only show you how something should be done- but in real life children need to be shown, be able to practise, get feedback etc. ABA is like social stories with a guide / coach.

If you think about how you teach swimming - you break it down - you start by putting your face in the water - then break the strokes down and teach legs then arms etc then gradually build up to swimming properly. ABA is exactly the same principle and you can use it for skills other children absorb but which your child doesn't eg social skills, dressing, toileting etc etc

You don't need a diagnosis to see an ABA provider and they will see you / your child initially for free and advise if they can help. Some run their own social skills groups your DSS could attend outside of school.

ABA also addresses behaviour issues and finds different motivators to encourage more appropriate behaviour.

I find I use it on all my children to get them to behave better not just the autistic one!

Mostly ABA would aim at getting the child to succeed in mainstream if they are bright - there is a benefit to having a group of children to use to practise social skills

Ultimately you would need to go the statementing route to access specialist provision / extra support. There are few primary schools for high functioning ASD - more at secondary esp independent schools. You should try and get a statement before you DSS leaves primary as it gets harder to get one as get older.

Diagnosis and Statementing can take many many months and does not necessarily bring the high quality help you might expect - it may just bring a 1:1 TA with limited experience. If you can afford private help - ABA or other then I would look into that now while you pursue the diagnosis / funding route. My son has fulltime 1:1 but they don't have a clue - his home ABA is far more effective. The truth is few teachers in mainstream have any training in how to teach social skills / toileting etc to children with ASD.

Early intervention is very important but you can only move as fast as the parents can cope with.

If you meet an ABA provider ask to speak to other families with similar children.

The understanding thing - I think you are talking about "theory of mind" - there is a long running thread on this if you search. Basically some autism "experts" consider those with autism have no theory of mind - but many others dispute this and say it just develops later on.

You can apply for a statement without a diagnosis and as statementing has set statutory timeframes this can actually help move things on quicker. But you would need to get the diagnosis ball rolling at the same time.

There are other downsides to waiting - alot of high functioning children have high anxiety esp when teenagers. Can be self harming, depression, school refusal issues etc. Also the older a child is the more aware that they are being seen by psychs etc and this can make them feel there is something 'wrong' with them whereas younger children can be less aware / more accepting of the diagnosis process.

Thank you so much for your replies, it's really useful to have such input!

DSS has had a pretty rough time over the last few years following his parents' separation, custody battle and other issues, none of which of course helped him. He now seems quite settled in terms of accepting the one week with us, one week with his mother routine.

We are London based so will look into the Portland Clinic as an option. DSS is in the statementing process and is having assessments etc, but it's so slow and there seems to be a lack of communication between the parties doing the assessments. Further, since communication between DP and his ex is extremely limited and strained, then it's hard for me to determine exactly what stage of the process DSS is at. Obviously, too, him being DSS, rather than my son, means that I have to try and tread a fine line between making suggestions (maybe as a more impartial party?) and upsetting DP who seems very hopeful that DSS might grow out of his problems (something I can't really see happening).

In terms of ABA provision, what's the best way to find practitioners/support groups etc that won't try and offer some kind of false hope or rip us off etc?

ABA is best done as an intensive therapy. Have you thought about how it would work when he is staying with his mother? Data-sharing would be needed so you (or the parents) would have to find some way of keeping the communication lines open. Whether or not you use ABA, consistency of approach will be essential and any caregivers will need to share as much information as possible. Full ABA and all these private assessments are expensive, yet the most helpful thing for the child will be for all of his caregivers to maintain the same approach and boundaries.

As someone on the autism spectrum, I can say for sure that I have some Theory of Mind but not anything like as much as other people have.

Most of us start off with none, then gradually learn the rules 'manually' rather than automatically.

The Sally-Anne test, involving a box and a ball, is good for very young children but many of us learn eventually to answer correctly through sheer reason, not instinctive understanding.

Lots of things they 'knew' about autism have turned out to be untrue. They 'knew' it was always boys (nope) and always severe (nope) and we can't have empathy (nope) and all of us are geniuses (nope) and we always struggle to talk (nope) and most of us live in care homes (nope). Etc etc.

It's really now believed to be two things - social communication clumsiness of epic proportions (because our brains don't link up the people-section of the brain properly), and a huge need to be able to predict what's about to happen and what we have to do next. Plus a reasonable number of us have big sensory sensitivity issues (too sensitive, too undersensitive).