How long we gona have to wait??????

I am on the waiting list to be diagnosed with autism and it has been so long since then. I got a phone call from my doctor to say that I have gotten referred but I have no other proof that something is actually being done about it. It has been hard for me as I am an unregistered visually impaired person with autism. Recently my condition has gotten worse as my mobility and balance issues have become more noticeable.

I am hoping after my diagnosis I can gain more access and more help from the services such as bus pass and more recognition of my condition. It just ticks me off about how long an adult or classed as an adult has to wait to be issued an appointment. It has been driving me crazy because my past schools should have picked up on my disabilities and now I am nearly an adult with no diagnosis and struggling through life with my physical, emotional and mental struggles.

IT'S JUST NOT FAIR. There should be more services and quicker waiting times. Society does not get the desperate need one has to claim the benefits of a professional, official diagnosis. This is injustice to us and we should not be discriminated or denied access to those facilities when we have the very right to use them. It's what they are there for!

Explain the impact on not receiving services like NAS EarlyBird. You can only get if you have received a diagnosis. Impact on the child, parents and siblings etc. Keep a daily diary and write observations going back to birth as these will be useful at each stage.

It’s in your interest to push forward and manage the process.

Also start early intervention now!

Rgs

My mum complained (my parents are divorced and my 'genetic donor' my problems are 'made up' and that it's my fault) at every oppurtunity but the problem is there aren't enough services, and the waiting lists are just that full. Unless theres more services created to help, there won't ever be enough proffessionals able to get you seen to within less than a month.

Also, a lot of these diagnositic services are aimed at people with young children, aged 5 and under, who rarely need an urgent diagnosis, and the adult services seem aimed at putting off as many applicants as possible.

Fraid you'll probably have to just sit tight, wait, and complain as best you can :(

Thank you Hope for your response, what do you mean by your motor skills, were you hyperactif? I am suspecting my little boy to have aspergers. He can recognise small word like kite, or cat, he recognise letter and number such 100 and he's not 3 yet. on the other hand he's not gone ask me when he want something, he's gone try to get it on his own or he's gone cry, he's not gone give me any clue on what he want. He's crying a lot since day 1 and he's got a challenging behaviour put himself in danger. he started to talk and as he's got two languages (i am speeking French to him) he's not doing to bad.

But I am not a professional and I find it difficult to deal with him on a daily basis. No one is telling how should I act with my boy. I think I am more though with my little girl and I feel gulty about this.

I am thinking also to contact the local press regardding the time that we have to wait for an assesment. I am just living 30 minutes away from centre London and I can't beleive this think happen.

KaloJaro, Thank you for sharing your story with me. This is not acceptable to have to wait that long.did your parents complain about this?

I was initially referred to CAHMs for OCD, and that was only because it'd gotten to the point where I was suicidal. I had to wait 6 months for my initial assessment, where I met a psychologist. She thought I might have Aspergers, so I had to wait another three months for an actual Aspergers test, because we needed another person present for it to be legit. I had to wait another month on top of that to finally get my statement and results. Took even longer to arranged for CBT and for my 6th form to actually try to help me.

Sadly, we're not on the governments priority list. It seems that they feel as though cutting down access to these services mean less people diagnosed, which to them means less people with access to disability services and funds which actually help those with any mental health issues live a fulfilling life.

Btw, I was 16 when this all started, I was diagnosed 5 months before my 18th birthday. I was taken off CAHMs services a month after I turned 18 because I was 'no longer a child'.

My parents thought something was different about me since I was 3 years old, but as it was very subtle, and Aspergers was not really talked about back then (in the early 90s), they did not have any answers. My motor skills were a cause for concern, and I had severe perceptual difficulties. I learnt some skills really quickly, like learning to read, but other skills did not develop as they should, such as my comprehension.

I have always had friendship and relationship difficulties, which got worse the older I got. I also developed OCD and grew very anxious, due to taking things literally.

My dad, a teacher, first learnt about aspergers in the year 1998, during an awareness raising course at his college. My parents became increasingly convinced that this is what I had; my mum had always suspected I was 'slightly autistic', but as I learnt to talk on time and was fairly able, she was not sure. It was only once they found out about Aspergers that things became clear. However, I did not get diagnosed until 11 years later, after I was referred to the mental health team for my OCD. I was then referred to the adult autism team for diagnosis.

My Son will be 3 year old in June. I have seen the peditrician in May last year and she referre him to the clinic but we waiting since 11 month now and no appointement date yet.

 I notice that he made a lot of progress in a year like he's responding to his name now , eye contact,.. and I think that it's due to his twin sister. however I can tell there is something different about him. He's obsess with letter and number and not doing any pretending play. I have a appointement with the speech therapit on wednesday (a least).

Hope, can I ask you how come your realise you have asparger, did your parents notice something during your childhood.

I am definitly ready to fight to get my little boy diagnosis, Thanks for your response.

remember there will a ton of other people waiting also,, find out who they are and YOU CAN ALL COMPLAINT to the council or MP.

There must be waiting guidelines,, 6 months or more is unreasonable.

Hello we had to wait 3 months from seeing her GP before my 6 year old daughter got her first appointment with the pediatrician. We were seen on the 8th of feb and her next appointments not till the 28th of june it is a long drawn out process the four months between appointments gives the ped plenty of time to contact the school and get blood test results back. I know how your feeling its hard not knowing and waiting for things to move on ive found that you have to fight to get any where. Good luck and keep going. 

Mel x

I had to wait over a year to be seen for my Asperger assessment, and this was adult services. I would have thought things would be quicker for children, but from what you say, this is obviously not the case. There is the Autism Act, which could help you fight your corner. You can download copies online.

How old is your son?