The review, your thoughts please

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Son was dx with high functioning or mild autism at age 3.5 by a psychologist with almost 30ys of training with ASD and other disorders. He is now 6 years old. A review was recommended by a speech therapist through early intervention who saw him once a week. The re assessment concluded that his speech language delay, rigidty, sensitivities to noise, smell, touch, hour long tantrums, ritualistic behaviours, controlling behaviours, low muscle tone, poor fine motor skills and tics are all due to a speech delay and have dropped the label.
However.... the decision by the psych was made before she even did the parent interview. She said that he is not on the spectrum at all because he has good eye contact and good use of non verbal gestures, and he has made friends at school. And as such we felt there was no need to try and go into any detail since she had already made up her mind prior to the interview.
We feel very unsupported by this organization. We know in our hearts it is much more than that of a language issue causing all the other issues. We know our son better than anyone and yes we refuse to stick our heads in the sand and be ignorant... we believe he is on the spectrum. Some people pick up on it, some dont. Mostly those who know him well do. My son talks about how he feels different to his friends and doesn’t know ‘how’ to make friends, tho kids do like him and play with him. He has indeed made improvements since the original dx, however that changes, he constantly goes through good and bad phases. The psych said that kids with autism do not improve like that. Well I question what would be the point of early intervention if that was the case. We have worked hard with him over the years at home and feel that this has had a huge impact on his improvements. He fits in well where he can because he doesn’t want people to see that he is different.

Can someone give me some advice please.

We feel in the future we will all face new challenges, obviously some which we can’t predict.

So; will HE need the label for his benefit now and in the future? Or do we go with the flow without it and just continue to help and support him at home, and in the hope that he will never be misunderstood.

What are the true benefits for him having the label? We have previously consulted private therapies and will continue to do so for any other assistance that we all may need from here on.

Any thoughts advice or comments appreciated.

As far as whether or not the label might be helpful, I think it depends a lot on what country you are in. In the US, the label helps if it comes from the school system (assuming you plan on public education) and he meets their criteria for qualifying for services. Then the school system is required to provide accomodations as he needs them. In some areas it is easy to get the school to live up to their responsibilities in others parents fight tooth and nail to get the services.

As far as opinions of "professionals" one statement that the neuro-behavioral psychologist we have seen really stuck with me. He said that kids on the spectrum and with other conditions like ADD and ADHD often develop in "fits and starts". They will appear at times to be significantly behind their peers in certain areas then they will have a leap of development and appear to be on par with their peers and the cycle repeats with the child sometimes appearing behind and other times just fine. I have seen this in our son and perhaps it has something to do with the conflicting opinions you have received. I would definietly trust your gut. If the therapies he has been receiving seem to be helping stick with it. I get really irritated with docs who say stuff like "He makes eye contact, he must not have autism". What a load of crap! Thankfully we have a pediatrician who has been very receptive to the opinions of the other professionals who have assessed our son.

Hang in there!

Well, the problem with these diagnoses is that they are entirely subjective - based on behaviors, not any particular physical markers or characteristics. So you can go to 10 different doctors and get 10 different opinions. If you strongly believe he is on the spectrum, you should consider getting a second opinion.

Hi blossom, your post fits with my situation and its extremely frustrating, like bombaloo said you will need the label I assume this is your local services if you need supports for your child at school. My children have had different labels thrown at them which have not helped to get support at school. To be honest I would not bother with the local services only I have no choice. The school doesnt pick up on my children's needs and I have gone private to a number of different specialist and my son has been dx AS.

I understand the pressure you are under as this situation has been so stressful for us as a family. My son improves all the time but does regress from time to time. We have also worked very hard with him and have no support, he was attending a play therapist (private), which I feel really helped him to express his feelings and thoughts. He used to get so stressed before and was unable to communicate and we were unable to figure out what was upsetting him.

Good luck, I cant say it gets easier, but understanding and supporting is all we can do!