Hi and Help needed feeling desperate

All I can remember of my schooldays is that I existed in a fog of confusion. Whilst there were things that fed my curiosity, and I never had a problem with taking in things like reading, writing and 'rithmetic (and don't we love numbers?) I didn't understand any 'structure', school, social etc, and couldn't grasp what it was all about.

So, I didn't know why I was there, I didn't interact with the other kids, I had no idea what was coming during the day, and if I copied what someone else did, I often got into trouble for it when the other kid didn't! Appropriately for this time of year, Christmas parties were held in our church hall, and I was totally intimidated by them - I didn't know why I was there, or what I was supposed to do. As I say, a complete fog of confusion.

I don't think that ordinary schools and educations are much use to AS children. In fact, I suspect that the Steiner approach is much more AS in flavour, but I have no direct experience of Steiner schools so I really can't say for certain.

What I can say for certain is that, as constantly reported by parents on here, schools and teachers consistently fail to grasp even the most fundamental needs of AS children. They can cope with children with all kinds of physical difficulties (although a patronising attitude seems to be fundamental to their approach) but the trouble for AS children, and adults, is that they CAN'T SEE OUR WHEELCHAIR.

I obviously relate to your son's experience, and yours as the loving parent who is trying to cope with the aftermath, but you really need to get across to school that your son has very different needs and they're failing to cater for them. You should express all of this to the headteacher - unless you tell them, they cannot know how your son is after school, as a direct result OF school.

They will work with you, but this needs constant communication between you, and they certainly need to listen to you. Experience, sadly, tells me that educators often believe their own publicity to the point where they just argue that they're 'doing everything they can'. I interpret this to mean 'those few things that we can be bothered with'. Children who don't fit the sausage machine are trouble and hard work, and they've got enough to do already...

Hi Sarahjen

I too have a 2 year old son who has autism i love him so very deeply and it breaks my heart that he cannot communicate very well with me. I am in the early stages of diagnonis and it feels like my world has fell apart. The first step to helping your son is to get him diagnosed. He clearly needs additional help. My son frequently meltdown when over stimulated by noise, lights, people ect. He can and will improve with the correct support. March straight into the school office and demand help for your son. Do not be fobbed off. Your son is there just as mine is he loves you so much. Do not give up on him, he needs you more than ever he just cannot show it but thats nobodys fault. Please keep in touch. Stay strong, perhaps to start with have the school move his desk to a quiter area of the classroom. I feel for you i realy do. But you are not alone, although i know if often feels that way.

I am not a childcare professional and don't know your son but do have a few suggestions that you can take or leave.

Firstly, autism doesn't automatically cause problems with reading or writing.  It is possible that he is just finding the whole school environment so overwhelming that it is affecting his learning, but it is also possible he has a comorbid learning difficulty such as dyslexia and it may be worth looking into.

Secondly, dealing with school all day and then a pre-schooler (they tend to be noisy and intrusive at that age) when he gets home may be more than he can cope with.  It may do them both some good if you have any friends or family that can take his brother out to facilitate a bit more 'alone time', although of course I understand that such things aren't always possible.

Finally, even as an adult I can struggle interacting in large, unstructured groups.  However, I can do very well one-on-one with someone who is on a similar wavelength, especially in a comfortable environment.  Perhaps rather than taking him to parties, a better option might be to try and find one or two individual children that he gets on with and set up play dates.  No guarantee of success of course but he may find it easier.  You could even organise an activity he enjoys (doesn't have to be complicated, could just be getting out some art equipment at home) as a point of shared interest to get them going (the point being not so much to complete anything necessarily but just as a mutual focus to get conversation/play started).

As Longman says, we can and do develop ways of managing with our problems. We learn to avoid some situations and need to try harder in others but some things will never be fun for us and some things will always be just too difficult to keep trying to master.

Parties were a nightmare when I was young. I never understood what I was supposed to do. The noise and everything were just unpleasant. I am now 56 and recently diagnosed so I have managed to get through most of life without anything catastrophic happening. I still don't enjoy going to parties but now I understand why. I don't have to go to parties so I am comfortable with that.

If you did force him to do these things then he might not learn. If you take the swimming lesson analogy. If you keep throwing a child into a pool then he might learn to swim if he can. If actually he has no idea what to do and doesn't have the skill to do it then he might drown. Continually exposing him to a situation that he doesn't cope with may result in "drowning" rather than swimming.

It needs enormous patience and understanding to succeed as a parent of someone with autism. If you try and work out what works and learn about how his mind works then you have every chance of getting through this in one piece. Confrontation and exposing him to situations he can't cope with should not be part of that strategy.

In reality, if people would agree, there are common elements. Recent research has identified areas in the brain that differ from non-autistic people, particularly affecting recognition of facial expression and awareness of environment.

The notion that everyone is affected differently isn't really a cop out - there are different degrees of manifestation of autism traits, plus comorbid elements (other conditions that occur with autism like dyslexia, ADHD, OCD) and then personality elements make a difference to the impact, so there really isn't a standard blueprint, although one of the curious things about autism is you can read about yourself in a text book.

The fundamental baseline feature is perhaps, that if you cannot make sense of your environment or communicate as effectively with others, there's a lot of work involved in just trying to compete with non-autistic people on their terms. There may not actually be such a big problem if you don't have to compete in the non-autistic world, which is why people choose solitude and isolation.

But you can develop coping and compensation strategies.

I think the things to suggest are that if socialising, such as parties, isn't easy trying to get him to get used to them isn't something you can do. Going swimming may involve sensory issues, noises and smells and proximity of people and strange environments, trying to keep going swimming with him won't make it any easier.

Meltdown represents stress, and hitting out may be a defence against sources of pain he doesn't understand. If people inflict perceived pain......

There are however parents on here going through similar experiences with children that age. Also, even if not yet diagnosed, find out if there is a local Autism parents' group near you or a local NAS branch, where you can meet other parents (the red maps on the home and community pages on the NAS website can heklp you find local services, though they tend tio be a bit London-centric, and throw up London resources at the start, scroll down a bit).

Not being able to communicate as effectively as non-autistics is a set back, but there are ways round it.