I feel like I am going round in circles at times …

[Honey-bunny]

Hello,

 

K is nearly 6 and we have been within the ‘system’ since she was about 2 and a half. We first became involved because she could not speak at the required mile stone; she made certain noises which we understood to mean certain things. She started pre-school at 3 and this seemed to help assisted with speech therapy/OT etc at our Children’s Centre. We have seen a pediatrician many times, yearly now and when pushed she said that K had a speech and language receptive and expressive delay.

 

When she was about 2 and a half she had her ‘ways’ which I suppose we just jogged along with. We could not break her routine that she decided she had. Meals had to be certain foods laid out in a certain way, toys were laid out in lines, puzzles were done a certain way and god help you if you tried to change how she wanted things done. She suffered with night terrors for years from as little as two a week up to 2 or 3 a night every night. She’s always been a little highly strung but being mum I could and can get round her but she can go off in a hysterical screaming fit not as often now though. Noisy toys had to be put away as she could not cope with them and singing was a no, no.

 

She now goes to main stream school, started in September. This was great as there was only 20 in the class, she has thrown herself totally into school and she loves it so much! She says that everyone is her best friend although she does not specifically have a best friend. I have watched her in the playground and she makes me cry, often she wanders around on her own singing, dancing etc whilst everyone else seems to play together. She has recently learned the art of imaginative play; she couldn’t do it for years not for the want of trying to teach her. We have a friend for tea once a week to encourage K to learn to play, which is helping.

 

She is a very friendly little girl, too friendly if you ask me speaking to anyone at all, which worries me. Her reading is beyond her age and she loves to read and read. Her writing too is excellent, although the OT says she doesn’t hold the pen properly!! She can’t cut with scissors, put on socks and do buttons.

 

She is obsessed with the computer and I have to fight (joking) to get on here sometimes. Her speech is fantastic now, although probably not on the same level as her peers. The problem we encounter now is her behavior not at home but at school. Her teacher is referring us to the ‘Cluster’ group (?) and I believe a behavioral therapist will come into school and observe her. I don’t seem to have these problems at home, or perhaps I am just used to dealing with her. I have recently been to see the school nurse who I think is referring us back to our pediatrician. I know K is different from other children; other parents see her at ‘normal’ as she doesn’t look different but in my heart I know there is more to this.

 

Autism has been batted about over the years as has ADD. Asperger’s has been questioned too as K has an older step-brother who was diagnosed at 5 (now 15) as having tendencies, he seems to have developed a coping strategy now. There are also two other children, a step-sister who is 13 and a sister who is 2 who both seem to be showing no signs of any differences.

 

I know K is not as bad as some children but feel that because she isn’t that bad no-one seems to want to help us – any suggestions please?

 

Thank you for taking the time to read this.

 

[Karen A]

Hi Honey-bunny.Welcome to the Forum.

We have Ben who is 10.

Ben is similar to K in many respects.His teacher originally raised the possibility of AS when he was 7.We had known since Ben was little that he was very different to our other son.

He talked very early and also learned to read with little help.At nursery Ben appeared a bit unusual.He did want to interact with others but was always a bit domineering with his peers.He prefered to talk with teachers about topics that interested him.

Until Ben was four he grew up in a house with three adults.My partner and myself were lodgers with a friend.So Ben had an awful lot of adult attention.

So until Ben was seven it was thought he was a bright lad who had lots of adult interaction and could have a bit of an attitude problem.

Ben was referred to CAMHS at age seven.After three years of debate he was diagnosed with AS a few months ago.

We have found that school was most difficult for Ben.During KS2 the children develop so much socially and the dynamics become very complicated.Ben has found it difficult to keep up.So he often is very upsett about things that happpen in the playground that he has not understood.This then leads to disruption for Ben and others in the following lessons.

Another area of difficulty in school for us has been awareness of ASD.Ben has very good spoken language.So Ben has frequently got into trouble because he has got into heated debates with school staff who expect Ben to behave like an adult.They did not understand that although Ben talks like an adult his Social Communication is more like the age of a child in reception.

We had several difficult years with school.However this year things have been much better.The current SENCO has a son with AS who is similar to Ben.So she has helped hugely with increasing staff understanding of ASD and of Ben.Ben's teacher has also been excellent.

Ben has a Statement of SEN with full time support.However during the last few months he has become more independent and is coping well.I think it is partly because the teacher is so good.She understands Ben very well and is able to balance providing support when needed with encouraging Ben in areas that are his strengths.

 

I don't know whether you have considered requesting an assessment for a possible diagnosis for AS ?

There should be a specialist multi-disciplinary team in your area who are responsible for conducting assessments.Your GP should be able to do a referral.

Is the support at school being documented ? Does K have an IEP and has anyone discussed placing her on the SEN register ?

I think it is worth ensuring that there is formal documentation in school that K is finding some things difficult.

If at a later date you wish to request a Statuary Assessment of SEN school will need to provide evidence of what has already been provided.

 

The cluster group and the behavioural therapist may well be helpful and could provide useful information.However it may be worth bearing in mind that they may not have training in support and specific difficulties related to ASD.

Some behavioural difficulties in AS arise due to lack of understanding of social situations or anxiety.So it is helpful if staff understand the specific needs that cause difficult behaviour and provide support for these.

So for example Ben can become anxious because there is a change in school routine.He will then argue because he is anxious.A teacher with little awareness of AS would probably adddress the fact that Ben is arguing whereas it may be much quicker and effective to be firm with Ben but explain the change in routine.

Most specialist support in school usually requires an ASD diagnosis in order to accesss the provision,so it may be worth requesting an assessment.

Karen.

[Honey-bunny]

Thank you Karen for taking the time to reply, I will digest what you say! Many thanks.

[Sally44]

Hi,

If you google DSM IV for autism you can read the diagnostic criteria.

There are usually three areas (referred to as the triad of impairments) for someone to be on the spectrum. That usually involves language and communications difficulties, social interactiona and play difficulties and problems with imagination/flexibility of thought and needs for routines and rituals or problems with change or transitions.

You seem to have mentioned a difficulty in each of those categories.

But being on the spectrum can range from mild to severe. However if she is on the spectrum there is help and support that can be given.

If she has a multi disciplinary team assessment by professionals that are experienced in diagnosing both aspergers and autism you may find some answers there. Usually, if language has not developed typically by the age of 3 Aspergers is ruled out.

As your child is doing okay academically (I presume she is keeping up with her peers). It may be that she needs some additional support in the classroom to ensure she is understanding and following instructions. She would need her speech to be assessed by a SALT. As you say she has receptive and expressive language difficulties that would indicate that she would need that extra support and would probably benefit from having visual information to reinforce what is said verbally. If she cannot access whole class learning she may need teaching in small groups.

Her difficulties with social interaction and playing are typical. But much can be done to help, support and teach children to interact and play. In our area the SALT would also be responsible for this and would include that in any programme. School can use structures such as circle of friends, or a Social Skills Group to improve and practice those skills.

Does your daughter also have sensory issues?

Is your daughter on the Special Educational Needs procedure ie. school action or school action plus? The SEN process is a progression of graduated increase in supports up to and including a Statement of Special Educational Needs. And special needs does not mean just academic needs. It also includes language and social interaction and sensory needs.